[Harpy]

in reply to: Vitamin D…Sneaky but it was worth it! #1176915

Good on you for that sneaky move,

Low Vitamin D levels seem to be very common with all manner of autoimmune diseases, no one really knows if this is a cause or effect situation, but there is a very high corrolation rate.
The other thing that may be worth checking is glucose tolerance/insulin resistance that also has significant corrolation to a variety of diseases even before it becomes a full blown diabetic condition.

[Harpy]

in reply to: Hyper Hormone Secretions? anyone know? #1176877

vanillasky wrote:

In a nutshell, my personal opinion is that the whole mish-mash makes things worse. They really can’t tell what is going on. The symptoms are the same for both and it is complicated.

I think you’ve summed that up well, but in addition do not discount the added issues you’ve mentioned of the gastroparisis and GERD, there is quite a school of thought that believes that the source of good/poor health is in the gut.

I am a man, so you can take whatever you care to from that, my journey in this health sphere began with my partners diagnosis of GD over 6 years ago, although I believe that she has been in and out of GD most of her adult life.

Kimberly is on the money in my opinion, most doctors/endo’s do not fully understand thyroid disorders and discount the effects of high antibody levels if thyroid hormones appear to be ok. We must remind ourselves that many of them still try to assess thyroid health with just looking at TSH levels, so I do not have particular confidence in their abilities, please note I do not believe they are bad people, just generally bad doctors because of the constraints of the systems they work in and the way they were trained.

My take is it took a long time to get you to ill health, and will most likely take a long time to get to good health, the system is geared to quick fixes, quick fixes are usually just masking symptoms, the system is like that because that is how most patients behave and what they seek from the system until their health totally collapses.
How many patients see that a change in diet or behaviour is a positive move, rather more often they will be seen to complain about the restrictions it places on them to go out and enjoy the good stuff in life, food, drink, busy lifestyle, etc?
If one sees healing as a temporary discomfort that they have to endure until they can get back to what they percieve as their life, then the healing will be just that, temporary.

I don’t know what the answers would be for your situation, but I think that a key part of it will be in improving your gut health, I have come to believe that a lot of health issues start there. It will ultimately be up to you to guide your healing process, by all means use all the resources available at your disposal, whether they are discussion groups like this one, doctors, medical journals, friends & family all are legitimate sources of information and opinion, but none of them are 100% right.

We took the healing process as a multipronged approach, diet, exercise, lifestyle & behaviours. Most people think they can not improve behaviour and attitude and can’t see a health conection, well this is where stress comes from and it won’t be until you take a hard deep look at yourself that you will actually understand this. Stress is not what the world does to you, it is how you respond to those actions and we underestimate the health ramifications of chronic stress just from normal everyday modern life.

Sorry it’s turned into a bit of a rant, but that’s my gig.

[Harpy]

in reply to: Dependent on Hormone Pills #1174131

VanIsleGal wrote:

Upon talking to family in Morocco, we discussed about 5 people who had the surgery for Graves’ disease there, one of them permanently losing her voice. None of these people were given another treatment option. This is not an academic study, but I do know Morocco medicine stems from the European model of medicine.

I based my decision on medical journal articles, studies, and personal stories. I have talked to people who have had success with RAI and many people struggling to regain health years after RAI. I have almost completed my PhD and I work at a university. I have access to journals and other scholarly articles with my university account. This is what I was reading. I don’t really know if these articles are available to the general public. I think most require a university account? I have saved some of these articles to discuss with my doctor and tell him why I didn’t feel comfortable with RAI.

How many people die or suffer from myexdema coma after RAI or as a result of being hypo as opposed to thyroid storm with Graves’ Disease? Of course I will not chose to stay hyper. My goal is long-term drug therapy, but my endocrinologist will probably call me tomorrow and I will learn more.

xoxo

That’s pretty much the best you can do,
Gather all relevant and related information, consider all the Pro’s & Con’s and make an informed decision, everyone will weigh benefits & risks differently, so even with the same information presented individuals may well make different choices.
One thing I will say, keep researching and reading, the more you know the better you will be able to apply appropriate healing protocols.

[Harpy]

in reply to: Vitamin D & Autoimmune Thyroid Disease #1173417

Kimberly wrote:

Just a quick note to stress the importance of working with your doctor to get tested prior to adding a Vitamin D supplement. My own endo does this testing and has recommended supplementation in my case, but there can be toxic effects if you get *too* much Vitamin D (as is the case with most other vitamins/minerals).

Agreed,
Always get tested and discuss with your doctor if supplementation is required.

Just need to add that all of the Vitamin D toxicity cases that I have read about are from contaminated food products where there was an error in the fortification by factors of around 100’s or more.

Normal doses recommended are 1,000-5,000IU/day, for most people this is not much more than a maintenance dose and only stops their levels falling further, overall it is pretty poorly absorbed.
Supervised medical dosing has been done for long periods of time at between 10,000-50,000IU/day in trials on MS patients with no ill effects.
Mild toxicity has been seen around 75,000IU/day
Acute toxicity requires longer term doses in the order of 600,000/day

The skin (full body) can produce up to 20-30,000IU Vitamin D in a half hour sitting in the sunshine, but it is only slowly absorbed over a couple of days and a lot degrades or is washed off in our daily scrubbing.

Vitamin A is the bigger concern with toxicity, that’s one most people hear about where someone has just gone overboard and eaten liver for a week.

[Harpy]

in reply to: Help With Phobia #1173065

You need to get treatment as soon as possible, GD will only get worse and you will end up in ER.
So do whatever it takes:
The Phobia, you need some form of counselling to get over that, but the GD will be aggravating your anxiety, so you will just need to come up with a rationale of some type that will allow you to swallow the meds, whatever your mantra is, you need to take the medication.
Document your story, times, dates, who you spoke to, what was said, etc.
Six months is far too long to wait for treatment if you have a clear diagnosis of GD, talk to your doctor, can he refer you to another Endo to get in sooner?
Contact the local hospital in person and in writing, stating your situation and that you are seeking appropriate medical treatment.
Write to your local member in politics regarding you situation and the quality of health care, use email or registered mail so you have proof of delivery.
In all your communications remain firm but civil and advise that you will continue to document all responses or lack therein and go higher until your medical treatment has been adressed.
If you have to, go to the local media, although by the time you have done the other things above I think you will already get some action.

In saying this, you have to be prepared to take the prescribed medication.

[Harpy]

in reply to: OK now what…RAI Seriously??? #1173309

gatorgirly wrote:

Of course, I respect “your opinion” but I respectfully disagree.

I’ll take that one on the chin.
My apologies,
I did not intend to suggest in any way that one is responsible for the onset of GD, merely that this has revealed a susceptability that one needs to be aware of and adapt to going forward.

[Harpy]

in reply to: OK now what…RAI Seriously??? #1173304

All three treatment options carry their own set of potential risks and rewards. With regards to ATD’s the risks are as you say potential liver issues, but these are most likely to manifest in the first 3 months of treatment and are more often associated with high dose treatment and MMi is a lower risk than PTU.
While the reward is potential remission with a fully functioning thyroid gland and no need for ongoing medication/hormone supplementation to maintain normal body functions, and if they should have a relapse they still have all three options open to them.
With regards to doctors & criticism, like anyone with a firm position on anything, they should be able to produce a raft of data to refute the opposing view, failure to do this can only indicate a lack of knowledge or time, both of which in “my opinion” are an indication of poor medical care with a focus on the welfare of the system rather than that of the patient.
A good doctor will have the confidence of their patient and will take the time to discuss, inform, reassure & support them through this difficult time in their healing journey and the need for internet support/discussion groups would fade away into history.
So to Darcy43 and all GD patients I hope you find a healing path appropriate to your needs, there are rarely any easy choices in life usually they lie somewhere between hard & not so hard. Everyone will apply different weightings to priorities in their life and this will then govern why they choose A over B while others will go the other way, both are appropriate with respect to the individual, no matter what ensure it is your choice and you are prepared to take ownership & responsibility for it.

[Harpy]

in reply to: Vitamin D & Autoimmune Thyroid Disease #1173407

There is a strong corrolation between Vitamin D deficiency and many Autoimmune diseases & cancers, but that is not to say that it is a causal relationship, just that very often both conditions are present at the same time.
Vitamin D is a modulator of the adaptive immune response by stimulation of Regulatory T-Cells, so there is the possibility that low Vit D levels may leave the door open for an autoimmune response, but low Vit D levels will certainly be an aggravating factor when there is an autoimmune disease present.
So the main thing is, knowing that there is a risk of low Vit D levels when GD is present, to get levels checked and consult with a practitioner to normalize levels by supplementation and/or direct sun exposure.
Note Vitamin D is produced in the skin by exposure to UVB rays which are strongest in the middle of the day (10-2), they are also the ones that are responsible for the sunburn response, which appears to be an indicator that you have maxed out on Vitamin D, conversly the UVA rays are the ones that penetrate much deeper, produce the tanning effect (melanin production) and cause the greater skin damage. Most guidelines say 15-20 min of daily good body exposure to the sun is plenty, so don’t get burned, this can produce 20-30,000 IU of Vitamin D. Obviously do not apply sunscreen for this brief time and also do not have a shower immediately after as the Vit D is close to the surface and needs time to be absorbed by the body.

[Harpy]

in reply to: graves with weight gain #1173394

The weight issues associated with thyroid disease are not fully understood at this stage.
The usual response is in line with the changes in metabolic rate so Hyperthyroid individuals usually lose weight while Hypothyroid individuals usually gain weight and this is primarily related to FT3 & FT4 levels, but there are a number of other hormones including Leptin, Insulin & TSH itself also play a role in body mass management.
There are TSH receptors (TSHR) present in fat (adipose) tissue as well as other body tissues outside of the thyroid, my reading of this information is that stimulation of TSHR results in Lipolysis so theoretically higher levels of TSH should result in weight loss and lower levels to weight gain. This is the opposite to what is normally seen and may well be explained by excessive TSHR stimulation by the TSHRab’s (antibodies) in the adipose tissue of Graves patients, hence causing weight loss even while TSH levels are extremely low.
Many GD patients experience Hypo symptoms and can cycle quite a few times before the go into full blown GD.
So the issue is not that simple, weight gain/loss is just a symptom of the autoimmune disease that does need to be treated, so please do not defer treatment in the hope of losing weight.
The review of studies below goes into TSHR functions in the body not just weight gain, this information reinforces the fact that TSH plays many roles in the body, not just management of Thyroid hormone levels.
http://joe.endocrinology-journals.org/content/204/1/13.full

[Harpy]

in reply to: OK now what…RAI Seriously??? #1173302

Sorry you are being pushed into making a decision that you are not ready to make.
My partner also had the same sort of pressure after 12 months on PTU, but she was firm in her belief she could kick this and her and the Endo “agreed to disagree” on that point. She continued on PTU, 5 yrs+ now, and when her TSH returned this year the Endo admitted that “they lost the bet on that one”, she is progressing fine, feels great, has no symptoms and is looking forward to remission.
Individuals that are going to have an adverse liver reaction to ATD’s generally see this within 6 weeks of starting med’s otherwise most seem to have no adverse effects from the ATD’s, even with long term use.
In “my opinion” GD is a “wake up call” that requires one to pay more attention to their health and if one does not change their ways they will have ongoing issues irrespective of what treatment path is taken.
I hope you can find a resolution that is appropriate to your needs.

[Harpy]

in reply to: Remission rate improved by extended ATD treatment. #1172861

I’ve been doing a bit of reading through various studies on the topic of ATD treatment protocols including Block and Replace, although I can’t seem to locate the often quoted Japanese study, not sure if it actually is the one linked a couple of posts back. In regard to the replication of the Japanese study, other information I stumbled across indicated the Japanese protocol for B & R was generally 3-5 years treatment, whereas the attempted replications generally went from 6 months to 2 years, with a different dosing protocol, hardly what one would call a replication.
But it did take me across a lot of interesting related studies, although they were unable to replicate the results, generally only reporting remission rates of 50-60%, but what wasn’t reported in the headline, but buried within the paper was the inference of remission predictors. Most of the studies did do some review breakdown of the patients that relapsed vs remission and reported strong remission indicators, the main ones being:
The presence of normal TSH levels
Low (negative) TSH receptor antibody levels
Reduced or Normal Goitre size
Smoking was also noted in a couple.
I didn’t try to recalculate the remission rates when these factors were taken into account, but as a rough guess it was in the >80% catagory, which is much improved.

So therefore the often quoted rate of 50-60% remission rate does not take any of these factors into account and seeing as there is an overall reluctance of Endo’s to test for antibodies and the withdrawal of medication before TSH levels have been normalised, it seems that many Endo’s have not read any of these studies either.

The one below specifically looks at TSH receptor antibodies and reports a predictive factor of over 70% for remission
http://www.thyroid.jp/pdf/dr_prediction_of_Graves_remission.pdf

Along with the predictive factors reported in the studies there are likely others that could be assembled with a weighted scoring that Endo’s could use as an effective support tool in their management of GD and give their patients a much more accurate prognosis in both treatment protocol and decisions of when it would be appropriate to stop treatment to evaluate remission.

The one listed was relatively recent, 2006, whereas the majority of the other papers were generally around 15 years old and most had stated that more studies were needed to fully evaluate treatment protocols and the questions that surfaced in their own trials, particularly the predictive factors, this work does not seem to have been done yet as far as I am aware.

[Harpy]

in reply to: Remission rate improved by extended ATD treatment. #1172860

Darcy43
Thanks for the generous comment, almost sent me to your “crying thread”.
Been a bit busy, you know how it is, life just doesn’t hesitate in getting in the way.

Kimberly
My appologies, I did not intend to suggest in any way this was your opinion, just going freehand and did not proof effectively, have gone back and edited the line to more effectively reflect it as an outcome of the study linked.

Kimberly wrote:

Harpy wrote:

2/ Add Back of Thyroxine as finishing process in treatment, as per your study.

Hi Harpy – My point with that study, though, is that the results have never been able to be replicated in any other study. So I wouldn’t use that one study to advocate the use of Thyroxine as a factor in bringing on remission.

Just because a study hasn’t been replicated doesn’t mean it’s totally without merit…but it does cast some doubt on the findings.

Take care!

[Harpy]

in reply to: Remission rate improved by extended ATD treatment. #1172857

Thanks Kimberly
I read some stuff on the Block & Replace a while back and from memory I think it may have been a combination of both dose levels as well as treatment period which may have contributed to the difference in results between the Japanese studies & elsewhere & as you say there may well be a genetic factor in racial origins as well.
I had a look at the study you posted and that definately seems to indicate an unknown beneficial factor in using Thyroxine supplementation in the final treatment stages of GD to further improve rates of remission. I haven’t read the full study, just the brief, but do wonder if the Thyroxine supplementation, which would naturally result in lowered TSH levels, hence reducing thyroid production of FT4 may simply allow the thyroid more healing time or if the Thyroxine itself has some other beneficial effect. I was aware of using thyroxine to better manage FT3 & FT4 levels, but this study suggests it could be used as an active part of the treatment protocol for GD.
http://www.nejm.org/doi/full/10.1056/NEJM199104043241403

To improve likelihood of lasting remission there seems to be a number of factors that may or may not be additive.
1/ Extended ATD treatment periods once FT3, FT4 & TSH levels have been stabilised.
2/ Add Back of Thyroxine as finishing process in treatment, as per outcomes of study in link above.
3/ Low TSH receptor antibody levels before withdrawal of ATD treatment, well within stated range.
4/ Personal changes, attitudes, employment, diet, lifestyle etc.

[Harpy]

in reply to: Immunologist and GD #1172868

Carito71
I agree with you, it would be great if we could have a doctor that could do it all, but with the way our health systems are structured, underfunded in both time & money, that aint happening any time soon and to some degree that would also remove ownership from the patient, though not many want to own GD.
I think it is important for the individual to re-aquaint themselves with their bodies and become more informed on their own disease, this way they can be involved in an active partnership, with their care providors, in their own healing process.
On the flip side I think doctors need to be more respectful of their patients and the valuable contribution they can make to the process if this relationship is nurtured.
As to who is best equipped to treat your condition, at this point in time it is most likely still the endochronologist as they are most knowledgable of the thyroid behaviour and this is primary symptoms that need to be dealt with. But as you say this still leaves the underlying autoimmune condition to be dealt with and many Endo’s seem to disregard this fact entirely. As for the cause of the autoimmune response I feel that although every individual may have a slightly different trigger, but I see it more as a set of conditions, so the final trigger is more like “the straw that broke the camels back”. Some of those conditions are genetics, diet, stress, toxins etc. and the more of these we can improve, the better we place our bodies in a position to heal themselves.
I spend quite a bit of time scouting around on MS & other autoimmune groups and they all seem to come back to the same types disease triggers and there is a variety of conditions and some cancers that are being re assessed as autoimmune conditions, so the autoimmune disease family is growing day by day.
Glad to hear your Coeliacs is under control, I decided to cut out Gluten & grains recently for health improvement reasons and found that trying to substitute was the hardest part i.e. Gluten free pasta, bread etc., so I took the other approach, a paradigm shift in redefining what food and meals were. This means bread & pasta is no longer part of my perception of what a meal is, this removes a lot of the time, effort & cost for me and I have been replacing these with a whole new set of meal structures and developing new favorites to help retrain those “cravings neurons”.
I’ts all part of our journey, stand tall, you get the best view that way.

[Harpy]

in reply to: My new labs #1172834

Not sure what the guidelines are elswhere, but our Endo always requested the three std tests:
FT4 – as the primary guide for dosage adjustment.
FT3 – to monitor as a secondary guide to dose adjustment, primarily if it was not trending in the same manner as FT4, which my partners didn’t until the latter part of treatment.
& TSH – to determine when the Pituitary gland had resumed TSH production, indicating that it was likely clear of TSH antibodies.

We would have liked more routine testing of the TSH receptor antibodies, but our Endo did not feel that it would have yielded any valuable information, but she did let us get them tested occassionally.

Good to see you are getting treatment and your numbers look like they are improving, sounds like you’re body is dealing relatively well with the Hyperthyroid symptoms and hope it all continues in a positive direction for you.

[Author]

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