[NLBatten]

#1059216

Dx 2/21; RAI 2/24. Hypo by 4/13. First labs (telling me I was hypo only because I requested the labs bcs I knew something was up – wasn’t scheduled to have labs for another 6 weeks) 7.8 TSH (.3 – 5.1 range) / FT4 .44 (.73-1.95 range)/ Total T3 39 (90-200 range). Started on 150 mcg Synthroid. Returned for labs 6/1 and got TSH 1.733 / FT4 1.56 / Total T3 87.52 (low). Was told I was normal and don’t come back for 3 months. (By the way dr told me at my first visit after RAI that she didn’t need to see me for 1 year. All communication would be via labwork – i.e. she didn’t care how I felt as long as my numbers were “normal.

Anyway, I have been really feeling poor. My hair is so dry though not as much is falling out. Nails still splitting though definitely improved. VERY VERY fatigued and so very depressed. I have been going thru a lot at work but still this depression thing seems more than that. Swollen feet. Muscles in the bottom of my feet hurt. Charlie horses in my calves in the middle of the night. Achy hips. I started taking Crestor after having gone off of Lipitor back in January thinking that is why I was having so much muscle pain. Now I am not sure if it was the Lipitor or the Graves, so I agreed to try a statin again.

I decided to ask Endo for new labs even tho only 6 weeks and not 3 months. Told her my symptoms. She agreed (via nurse) to retest. Results – TSH 1.855 / FT4 1.27 / FT3 2.1 (low – range is 2.3-4.2). (For some reason she did Free T3 instead of Total T3 this time.) She sent me a quick email (no call) – labs are normal no change. Return in 3 months.

So, first I think I am going to stop the Crestor. I have only been taking it 3 weeks and seemed to have felt worse since I started it. Maybe that is the cause for my misery. If not (and frankly even if), I think it is time to find a new Endo. My numbers may be in range but I am a person not a number and I am beyond frustrated. I am concerned that she didn’t do antibody tests in the first place and what if there is something else up. And if she didn’t care to do them before RAI, maybe she just threw a quick fix at me and I should have tried other options. Too late now. She gave me 20 mcf (or whatever the measurement was), with no intention of me ever being eurothyroid which I know is pretty standard but my point being can’t go back now.

Meanwhile, when all this started I was referred to a rheumatologist for the muscle pain and she is the one that found my low TSH and referred me to Endo. She also found low vitamin D so I have been taking more of that and then she keeps wanting me to come back every 9 weeks. I went back this week and they called today (after having ordered the wrong labs and not having enough blood drawn before the appt therefore having to get blood work 2 days in a row), and nurse left message saying – all is normal come back in 9 weeks. Well what the heck for? What is she looking for? I don’t need a dang rheumatologist that wants to see me all the time when I have no rheumotological problems. I need a stinking endo who cares how I feel especially after something as serious as Graves and shot me full of radiation and killed one of my organs but doesn’t care to see me for 1 year!

Sorry for the long rant. I am just feeling so stinking ignored and frustrated that I have to figure out what’s wrong with me and who to ask and press them for test so that I can feel better. I don’t want to just take another med (i.e. anti-depressant) if there is an actual justifiable medical reason that can be altered before adding even more meds….Am I justified in looking for another Endo? I thought target TSH was closer to 1.0 plus T3 has been slightly low both times since starting Synthroid and I just plain don’t feel well. I am only 44 so it isn’t the over 50 bone loss thing that would make them want to keep my TSH higher. I think she just plain doesn’t give a hoot.

[adenure]

#1173040

I’m sorry I feel your pain- at least a little anyway. I had my thyroidectomy (total) 5 weeks ago and I’m feeling yucko too. The surgery went really well, so that’s a big plus. The hormones are out of whack though. My TSH was 4.15 last Saturday and my free T4 was mid- high normal range- how weird is that? I don’t know my T3. I asked my endo. to test the T3 when I go back in 2 more weeks to be tested. He won’t change my dose bc he wants to wait at least 6 weeks post op. if not 8. I don’t think I can wait that long. So, I compromised with 7 weeks if I can hold out. I have headaches everyday and screwy sleep, and yes I’m down too. Depressed? Yeah, I guess so, but I’m trying to stay positive. I start crying just bc I hate feeling like this- that every second is a struggle of positive talk and trying to “hang in there”. No fun. I’m on 100 mcg of Synthroid. I am keeping in mind Nature Throid (T4 & T3) combo, but I am willing to give the SYnthroid a chance to work. I’m just hoping it does. I have 4 young boys that depend on me all day (not just summer as we homeschool). So, I really need to get straightened out here at some point. It’s tough and it can be so discouraging- bordering on despair at times. I’m just super grateful my surgery was complication free and went well. The hormones are enough to deal with. Well, let’s hang in there girlfriend! 😎

Alexis

[beach45]

#1173041

I know this all can be very frustrating NLBatten. I went hypothyroid two times on Methimazole in past and I had the very same symptoms. It was horrible. Plus some statin drugs can cause muscle pain and typically that happens in the initial phase of taking them as my sister works with those and many other drugs at the FDA. I have been having my own struggles as at 11 weeks post RAI I still probably am not eurothyroid or hypothyroid yet know from still some hyperthyroid symptoms I am having; although in some ways I think I have some slight hypothyroid symptoms too. My issue is to not feel like I did when I went severely hypothyroid on Methimazole as what you talk about reminds me of that time. I mentioned that to my endocrinologist as he was not the doctor who had been following me the whole 20 months when I was on Methimazole; I started seeing him at the tail end. My endocrinologist will see me when I’m still hyperthyroid and is testing me right now post RAI every month. He said once I go hypothyroid and on Synthroid, it will most likely be just over the phone and call into the pharmacy if I need any adjustments to the Synthroid. He is a numbers doctor only; he said he does not go by symptoms. He told me at last months visit that the symptoms will occur before the numbers change. He also said like you mentioned over 50 TSH should not be kept at “1” yet between 2-3. I have spoken to another endocrinologist and he said that everyone’s TSH should be at “1.”

Something that works for me with doctors is to research and bring medical journals or medical articles all from reliable sources written by MDs that suggest guidelines that should be followed with follow-up to Graves treatment. I find I have to be my own health care advocate and to specifically discuss in my short amount of time with my endocrinologist, the key points or issues and have my information there in a folder to back myself up in necessary. The doctors do not go by hearsay though as I find. It is not easy and I still struggle and found a wonderful endo who would work with me yet I will not switch right now as I want to follow through for a bit post RAI. I also find switching doctors for myself, as I had to when the endo I loved left my area, is also very stressful.

I am finding with this disease there is no absolute and that endocrinologists do not all agree with how to approach this. I do know most of them do not prescribe T3; at least the ones I dealt with. I also have had experience that a lot of them only go by numbers only yet there are some out there if you search who go by both symptoms and numbers. It sometimes is wise to get a second opinion or more if the patient is up for it. I’ve already consulted with four endocrinologists and limited in my area. I have also mentioned that book “The Thyroid Solution” by Ridha Arem, who is also in the Physician’s registery on this site, and it talks about how the thyroid needs to be balanced properly before thinking that there are other problems such as RA or another issue. Even people who had depression if the thyroid was addressed properly with thyroid hormone, no longer needed antidepressants and of course this depends on the individual circumstance. No we are not numbers only, and I know how you feel as I too have been treated as such in past. I had so many miserable symptoms when I was drug induced hypothyroid, depression so low (I was never a depressed person and lived through many tragedies), weight gain, no motivation, horrible hair and nails, muscle cramps, pains all over, so fatigued I could hardly move and the list goes on; the doctors said it was not thyroid. NOT! I pleaded with the doctor at the time to reduce my Methimazole dosage and then in a few weeks I felt more like me; no depression and everything improved greatly except I swung too much the other way and no doctor could get me right so I had to have the 15 mCi of I-131/RAI. I don’t like to project, yet I fear that will happen to me again and I hear now what you are going through post RAI once you went hypo. I hope you can find another doctor who will listen and get you to the point where you feel yourself again. Hang in there. I keep saying that better days are coming and there are many success stories and sometimes it takes time and just the right doctor. I hope you both feel better soon!…beach

[Bobbi]

#1173042

First: I am sorry that you are feeling rotten, still, NLBatten. I’m not remembering the specifics of your Graves’ journey here, but the first thing that crossed my mind is that you need to expect to spend months AT normal levels of thyroid hormone for your body to heal. We do not automatically feel well again once our levels are normal. You should see improvement over when you were hyper, but not necessarily absolute “normal,” for a while.

Second: You have done the right thing in getting your thyroid levels checked. Obviously, when you feel rotten, “off,” getting thyroid checks are a good place to start because if they are off, it is easy to fix.

Third: Since those levels are apparently not “off,” you now have to get your doctor to help you figure out what IS causing you to feel depressed and fatigued. This is not necessarily the job of the endo, although it can be a huge help if the endo is willing to pursue the symptoms and try to figure out what is wrong. But since your endo seems to be unavailable that way, if you can go back to your GP or internist, that could be a place to start.

But, going back to my first point. It takes time at normal levels for us to heal. Think of the analogy of someone who just had a knee replaced — the new knee does not automatically give them mobility. They have to do physical therapy to regain mobility and normality with the knee. Well, we, too, need to do a bit of “physical therapy” to regain muscle strength and stamina. We don’t necessarily have to see a physical therapist, but we do need sometimes to force ourselves to take walks, pump iron, do what we can to restrengthen returning muscles. I remember being tired when I first started exercising after RAI (when my doc said it was ok). And I would take short walks — 15 minutes or so — a couple of times a day. I would be tired to begin with, but the wee bit of exercise helped to make me feel a bit less tired. Or maybe it was just getting out in the sun, and doing “something.” Whatever it was, I felt a bit better for the small bit of exercise. And it helped me to do more, over time. If you have been waiting to feel better before you do things, you might try to reverse your thinking and make yourself do a bit of exercise. If it’s too hot, take the walk in a local enclosed mall. But do baby steps. Test your stamina , don’t wear yourself out.

And, treat yourself to a funny movie, even if it’s a rental. Put yourself into a situation where you will laugh — it does make us feel better. I must have watched my dvd copy of “Jumpin’ Jack Flash” a dozen times or so while I was recovering from hyperthyroidism. I would be feeling down/depressed and I would put that movie (or a Bill Cosby monologue) into the player and watch and start to chuckle, and I DID feel better for it. You might try it.

I hope you are feeling better soon.

[Kimberly]

#1173043

Hello – Just a quick note that while not all patients have a positive experience adding T3 to their regimen, having *low* T3 levels can certainly cause hypO symptoms.

You might ask your GP or another doc to put a second set of eyes on your latest labs.

Also, keep in mind that the “normal” range is fairly wide, and I am starting to hear more docs say they believe that each patient has a particular spot in the range where they tend to feel their best.

Take care — and please be persistent until you can find a doc who will help get you back on the path to good health!

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