[Babygirly]

#1058718

Hello, I hope someone can help, I am struggling a bit. I was diagnosed with Graves about 2 months ago, which seems to have been triggered in the post partum period. I was originally prescribed ptu as i am breastfeeding, but i refused treatment from my GP requesting to see an endo instead. The endo presecribe a lower dose of ptu and discussed issues with breastfeeding going some way to put my fears to rest. However, once starting treatment i started itching like crazy. I was advised by the gp to dreduce the dose while waiting for blood test results. These came back as a hig white blood count and i was told to restart treatment and take antihistamines if the itching starts again.

Since then, which was about 3 weeks ago, I have stopped all treatment. I am being a bit of an ostrich, burying my head in the sand. I dont feel too ‘hyper’ but i am an emotional wreck.

I dont want treatment. I guess I am scared of acknowlging the issue. I also dont want to stop breastfeeding, but dont want to put the baby at risk at all. The doctor didnt really understnad as the baby is actually 11 months – they basically said there is no reason to continue.

I cant think straight about this stuff, my brain is really foggy. Hiding seems the easiest option at the minute.

Does anyone have any words of advice?

[Kimberly]

#1169534

Hello – Hopefully, you will hear from others who have had to make a similar decision while breast feeding.

You mentioned that you were struggling emotionally – this can absolutely be a sign of thyroid hormone levels being out of balance. Hyperthyroidism not only affects us physically, but can also affect emotions, memory, and concentration.

You do have two other treatment options besides Anti-Thyroid Drugs: surgery and Radioactive Iodine (RAI). All three treatment options do have risks and benefits. With the RAI, you would need to discontinue breast feeding. And, of course, any type of surgery carries a certain level of risk.

The bottom line, though, is that you *do* need to select one of the three treatment options to manage your Graves’. The longer you go without treatment, the more risk you run of complications including bone/muscle wasting, heart issues, and a very serious condition called thyroid storm. Pursuing treatment will get you started back on the path to healing your body — and feeling well again.

[mollyl]

#1169535

My heart goes out to you. The most important thing is that you get well so that you are a whole, strong parent for your child. And so that you can live life fully.
When we are in the stage that you are it is so hard to focus and to see things clearly. You do need to make a treatment choice. This condition does not go away. It’s been 7 years since I was diagnosed. Life post treatment is so much more manageable than life pre treatment.

[LaurelM]

#1169536

Hi,

A possibility would be to ask if you could try to switch to Methimazole to see if you tolerate it better. I was diagnosed post-partum (8 months) and breastfeeding. I was started on Methimazole. Luckily for me, my endo was supportive of continued breastfeeding. My baby’s Dr conferred with the pediatric endos at our area children’s hospital who also supported continued nursing. I think I live in a region that is generally more supportive than many other areas of the country.

Surgery can also be a breastfeeding supportive option. It would only require a few hour break from nursing. Some of the newer advice is a short as 2-4 hours post-op. The old school advice is 24 hours. Doctors will vary in their recommendations but you should research this for yourself so that you can make an informed decision.

The worst option is not getting treatment. It is important to your child to have a healty and happy parent and in the Graves emotional roller coaster and brain fog, it can be difficult to see the long term goal when the present is so chaotic. It will get better and the difference is night and day.

Best regards and congratulations on your little one.

Laurel

[Babygirly]

#1169537

Thank you all for your replies!

I find it really hard to make a final decision about bf and taking the meds. My endo although supportive, doesn’t seem to know much. All the literature says the benefits of bf outweigh the risks but this seems to be based on a new baby. For a new baby bf has many many benefits, for a 12 month old, not so many. My endo said it would ‘probably’ be ok. Probably is not good enough when it is my child at risk!

LaurelM – did your doc say anything about dosage. Or timing feeds between meds? I can get lo down to 2 feeds a day, morning and night so could maybe take meds straight after so there is 12 hours between meds and feeds? Would this make a diffence?

And just mto make matters more complicated, my recent bloods show an improvement- without any treatment. That makes me want to hold off treatment even more!

I worry that the emotional instability is becoming the norm though, I think I have forgotten what it is like to feel normal.

[LaurelM]

#1169538

Hi Again,

No mention of the dosage affecting the BF recommendation was mentioned. I was on a fairly high initial dose but was able to taper down fairly rapidly. I only had to take it once per day (which was awesome as my memory was shot). Initally they checked my daughter’s thyroid levels every 3-4 weeks (by heel stick) just to be super cautious. As my dose decreased, the interval lengthed considerably. She weaned herself between 13-14 months. I was also newly pregnant in the meantime and switched to PTU for the 1st trimester. My second baby nursed until she was 2 1/2. She was much more attached to it and since she had a dairy allergy, it made life easier. At 6 weeks old, we noticed she was having intestinal bleeding and I had to go dairy-free. She still has not out-grown it. Rats!

Had I known we would be pregnant again so soon, I likely would have opted for the surgery as I didn’t like being on medication during pregnancy. I was able to stop taking it by about 4-6 weeks in but it was a big worry. We were all pretty sure that the GD would come back again post-partum and I would again have to make a treatment choice. Unexpectedly, I have maintained a remission.

The benefits of breastfeeding do continue past the first year. The World Heath Organization officially recommends up to 3 years of age. The American Academy of Pediatrics officially recommends at least one year. So, 12 months is the minimum recommendation – more is better (for both baby AND mom and there is a preponderance of science to back up those recomendations).

You will still have to weigh what is best for you and for your child. Nobody can make this difficult decision for you and it totally sucks that you are in this position. I get it.

Laurel

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