Hi all, I wonder if anyone can help. I have a previous diagnosis of Graves’ disease. My bloods in feb (untreated) were within normal range, fT4 12 pmol/l, TSH 2.34 miu/l. Unplanned pregnancy now, at 6+3 bloods came back at fT4 7, tsh 20.83. Started thyroxine 100mcg at 7+3. I’m terrified of neurodevelopment delay and autism risk due to thyroid deficiency in first trimester. Does anyone have any experience of outcomes or knowledge about this please?
Thanks
Hi CorAC
I can’t help with the pregnancy question, but was just wondering how your Graves’ was diagnosed and treated.
- did the endo order TSI or TRAb tests (for Graves’ antibodies) ?
- were you prescribed Carbimazole, or did you have RAI or surgery ?
- what were your thyroid levels at the time Graves’ was diagnosed ?
- how long ago were you diagnosed.
We’ve seen that some GPs, and even endos, tend to assume that anyone with thyroid tests in the hyper range is suffering from Graves’. However people with Hashimoto’s, another autoimmune disease, typically experience relatively brief periods of being hyper, but eventually become and remain hypo.
Thanks for your reply Valarian. I was diagnosed in May 13 with subclinical hyperthyroidism, fT4 23.7, TSH <0.05. They treated me with PTU because I was TTC. I’ve basically been swinging up and down since then, on/off PTU a few times, more stable than not, this is the first time I’ve been hypothyroid (that wasn’t induced by the PTU). Thyroid Peroxidase Antibody Aug 13 were >1300. TRAb in Nov 13 raised at 2.1, but in May 15 were <1.0. TSH receptor antibodies in May 16 when pregnant were within normal range <0.3.
Does that help? What do you think?
TRAb are specific to Graves’, but although 65% of people with Graves’ test positive for TPO, a result > 1300 sounds more like Hashi’s than Graves’ (someone with Hashi’s will have a better idea of this). It is possible to have both Hashi’s and Graves’ at the same time, in which case the medics will treat whichever appears to have precedence at the time - ie hypo or hyper.
The key thing now is to get your thyroid levels back on track.
Thank you for the insight. I have always wondered if there diagnosis was quite right. Other than taking the thyroxine are there any other really key things I could do to help? I haven’t had a lot of time to research how to support under active thyroid yet. Also, if it turns out I do have hashis, is there anything particularly important that I need to be aware of?
A short explanation of Hashi's 
Hashi's is an autoimmune disease, where the immune system attacks and slowly destroys the thyroid.
After every attack, the dying cells release their stock of thyroid hormone into the blood stream, causing the levels of the Frees to shoot up - FT4 around 30 something, FT3 around 11/12 - and the TSH therefore drops to suppressed.
There is no knowing how long these high levels will persist, but eventually, they will drop by themselves as the excess hormone is used up or excreted, and not only will you become hypo again, but slightly more hypo than before, because there is now less thyroid to make hormone.
Therefore, it's very important that your doctor does not reduce your prescription, because you’re going to need it again! If you start to feel over-medicated at that point - some do, some don't - the best thing is to stop levo for a few days, then, when you feel hypo again, start taking it again. It's very important to know one's body, and how it reacts.
There is no cure for Hashi's - which is probably one of the reasons that doctors ignore it - apart from the fact that they know nothing about it, of course! But, there are things the patient can do for him/herself.
a) adopt a 100% gluten-free diet. Hashi's people are often sensitive to gluten, even if they don't have Coeliac disease, so stopping it can make them feel much better, and can possibly reduce the antibodies. Worth a try. But, you should be aware that even if you get rid of the antibodies, you will still have Hashi's, because the antibodies are not the disease.
b) take selenium. This not only reputed to reduce antibodies, but can also help with conversion of T4 to T3 - something that Hashi's people often find difficult.
c) the best way to even out the swings from hypo to 'hyper' (often called Hashi's Flares, but that doesn't really sum up the way it works) is to keep the TSH suppressed. This is difficult because doctors are terrified by a suppressed TSH, for various false reasons, and because they don't understand the workings of Hashi's. But, TSH - Thyroid Stimulating Hormone (a pituitary hormone) - tries to stimulate the thyroid to make more hormone, but it also stimulates the immune system to attack. So, the less gland activity there is, the less immune system activity there will be, meaning less attacks, gland destruction slowed down and less swinging from hypo to hyper and back.
Just to reassure you - I believe I was undiagnosed hypothyroid throughout my pregnancy with my daughter, and probably had been for years. She is beautiful and bright and wonderful. I suffered a lot during my pregnancy, but that’s because everything I had went to my daughter. She flourished. Babies do just take what they need. If it’s not in your blood, they’ll extract it from your bones and muscles! It’s pretty brutal, but means that even if you are a mess you baby will be doing a lot better. I hope that’s a reassuring thought, and I wish you all the best for your pregnancy.
Thanks for your reply, I’m happy to hear your daughter was just fine. It’s proving very difficult when I know how low my levels are at this stage.
Hi CorAC
I would ask for an emergency appointment with my GP ASAP. I am currently trying to conceive and have thyroiditis (Hashimoto’s) and my consultant has advised that my TSH should be below 2.5. Get GP appointment as soon as you can and cite NICE guidelines on pregnancy and thyroid disease if you get resistance. Good luck.
Thanks for your reply, I’ve seen the NICE guidelines but I only presented hypo a couple of weeks ago and they’ve started me on treatment. Took bloods again yesterday but I’m guessing there’s nothing further they could do at this stage?
Hi. I don’t know a lot about this but I do know you need to get your tsh lower and frees higher. here’s a link to the Thyroid UK site that has information about pregnancy.
thyroiduk.org.uk/tuk/about_...
Hope this helps.
Thanks Maggie, that’s whats concerning me so much. Fingers crossed latest bloods show some improvement
FT4 and FT3 rising as well as TSH - confused!
suppressed TSH and high FT4
TSH going wrong way and no ft4 tested.
Low FT3 FT4 but normal TSH?
Why Elevated TSH but normal FT4?
