I am hoping someone will be able to offer me advice. Apologies in advance for the very long post.
Back in 2015-2016 I was barely able to function with many classic hypothyroid as well as low B12 low Vit D symptoms.
My TSH was 0.96 and my doctor was very dismissive and wanted to diagnose me with fibromyalgia, chronic fatigue and depression. (I have a history of depression and weight gain).
I knew something was way off and wouldn't accept his diagnosis, so I had all my own bloodwork done because I wanted to optimise everything to feel more normal and to try to conceive.
Free T3 4.3 (3.1 - 6.8)
Free T4 17.36 (12 - 22)
Total T3 1.9 (1.3 - 3.1)
Total T4 132 (59 - 154)
TSH receptor antibodies <0.4 (0 - 0.4)
Peroxidase antibodies 10 (<60)
Thyroglobilin antibodies 11 (<280)
Reverse T3 31 (10-24)
free T3/rT3 ratio 13.87 (>20)
Vitamin D 38 (75 - 200)
Vitamin B12 191 (191 - 663)
Folate 3.5 (4.6 - 18.7)
Magnesium 0.86 (0.7 - 1)
Selenium 1.0 (0.89-1.65)
Zinc 13.1 (11 - 24)
Ferritin 53.9 (13 - 150)
These results confirmed what I already suspected from my research, and I began self-medicating with Nature-Throid NDT, titrating up to 3 grains whilst observing symptoms and temperature. I also set about supplementing all the low vitamin levels, which are all very good now, with the exception of Ferritin, which is still lower than I'd like at 79.6 the last time I tested.
After starting all this in around March 2016, by January 2017, my rT3 had come down to 22, my free T3 went up to 6.51, and I was feeling pretty good, with most of my symptoms gone or much improved.
However, it didn't help with our fertility issues so we began to think about IVF. Once we'd investigated everything and were about to start the IVF process, I suddenly began to get scared that someone would notice my suppressed TSH (0.005), and so I discontinued the NDT treatment and hoped that perhaps correcting all my vitamin deficiencies would have also corrected the thyroid issues and that I'd continue feeling good.
Unfortunately, that wasn't the the case - although my rT3 stayed about the same and my TSH normalised (0.82) and my free T3 was on the decline again and was 5.15 at last test and I still believe it was on the decline after that. My free T3/rT3 ratio was back down to 15.9 and although I wasn't feeling as bad as I had before I started the NDT and corrected all the vitamins, my energy was gone, my weight was climbing again, my hair was falling out in clumps, my face, wrists and ankles were back to being swollen and tight again along with many of the other symptoms I had before I self-medicated. I started the NDT again just prior to our fertility treatment and began to feel normal again after titrating up to 2.5 grains, and there I stayed until our last egg collection, when the thought of an embryo transfer again made me worried about the medical profession spotting my supressed TSH, so I discontinued again, only to have the same symptoms return.
At this point, I decided I would try to go for as long as I could without the NDT, in the hope that after our embryo transfer, my low levels would be noticed or my TSH would spike so that I could get properly diagnosed, but I realised, that the chances of these things happening and getting a proper diagnosis are pretty slim and all the while I'd have to live with all the symptoms and might even put my baby at risk with an undiagnosed poorly functioning thyroid. I also did some extra research and have found that I have two copies of the faulty DIO2 gene, which confirms to me that I don't convert properly and it's likely I have low T3 in my cells. So after much agonising, a couple of weeks ago, I started on 1 grain of NDT again, with a view to titrating up to my ideal level again using symptoms, temp and blood results, and getting it stable again before I have our embryo transferred in April/May.
I have no problems self-medicating when it's just me and I feel very confident to do so after loads of research and my previous trials. However, it's a completely different scenario when talking about a pregnancy, and I really fear having to answer awkward questions about my suppressed TSH from medical "professionals" and I am really worried if they see the suppressed TSH, they will assume I am overactive, or if I admit the self-treatment, they will insist I stop (which could be extremely damaging to a baby) or they might put me on some sort of "baby at risk" register".
I can't bear the thought of discontinuing the NDT again, but I also can't bear the thought of my baby being put at risk, either by my actions, or the actions of a doctor who has no idea of my history, and sees numbers only.
My GPs are no use, and I have approached two endos privately who don't want anything to do with me. I have one other option on my list (Dr Oliver Frey) but even he said he'd only help with the approval of my gynecologist and I won't have one of those until a pregnancy is confirmed.
Does anyone have any advice at all in this situation?
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Lisaf01
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I don't know if I have Hashimotos - they did not appear to be a problem as you can see with my results above. I will test them again when I next have bloodwork done.
I have never officially been diagnosed with any thyroid issue, various GPs have repeatedly refused to investigate any of my issues and simply wanted to diagnose me with all sorts of other conditions to shut me up. I have never informed any of them that I took it upon myself to get well without their assistance, and I do not wish to have it on my record, in case of repercussions later.
My fear is that it will show up during normal pregnancy monitoring and my other concern is about how much to increase my dosage and how often to order bloods during pregnancy. My last concern actually is that if all goes well, I dose properly and no-one has a problem with it, I could encounter trouble when in hospital actually having the baby (I will be having a c-section for other unrelated reasons).
Apart from ensuring the TSH doesn't raise above around 2, and the free T3 is optimal within the range, I haven't found that much other useful information. When treating just for myself on NDT, I've only ever been concerned about T3, rT3 and symptoms and I don't know whether I should be watching T4 or not during pregnancy.
I expect I will have various new symptoms and sensations during pregnancy, so I won't necessarily be able to rely on knowing whether it's normal or a sign that I need to increase dosage. That's why I am keen to know if I should be watching for different things, working to different ranges, or even pre-emptively raising my dose during the first few weeks, even prior to bloodwork.
But they've been diagnosed, haven't they? We're talking here about me never having had a diagnosis, but knowing I need the NDT to feel normal. That's all fine when it's just me, but when I have a baby on board, it's a different ball game entirely.
When they see the suppressed TSH and ask who prescribed it, then we're on a sticky wicket - quite apart from the fact that they won't know how to properly monitor me, hence my need to get completely clear on my bloodwork and dosing plan in advance.
I've deleted a couple of posts about the alleged genetic heritability of Hashimoto's and DIO2 gene impairments. They were not appropriate on this thread.
If you must have NDT to feel well then take a smaller dose so that TSH doesn't become suppressed.
I do feel I need NDT to feel well, but at the dosage that gives me the level of T3 at which I feel well, near the top of range, it unfortunately suppresses my TSH to a level that would worry anyone that saw it. Additionally, I would need to raise my dose during pregnancy according to all the sources I've found, because with a suppressed TSH, my body wouldn't respond to the natural push to increase production and not taking enough would likely be more harmful than not taking any and relying on my natural (low) production.
I am reading a lot of conflicting information about where total and free T4 should be in pregnancy - when taking NDT, mine are suppressed a little, and I've read they are supposed to be high in pregnancy. Does that only apply when taking T4? I've also read what I believe is some crap about T3 not passing to the baby, but who knows exactly what to believe with this stuff. If I am uncertain, I won't be able to clearly state my case if challenged.
I guess my choices are:
Let them diagnose hyper, and just don't take whatever treatment they provide.
Explain my self-treatment and take the fallout - this option is giving me loads of stress, as I know I would get tongue-tied if interrogated about it, and I'm worried they might think I am putting the baby at risk. I read a case about a mother having her child taken away and being imprisoned after her ex complained to social services about her giving their child NDT on prescription from a Belgian doctor.
My IVF clinic has said that stress is an absolute no-no for this process to have a positive outcome, and I am trying to make sure I have all my ducks in a row, and medication on-hand well in advance of the embryo transfer. If there's a chance I might need some T4 too, then I'd like to buy it and have it on hand to avoid needing it and not being able to get it in a hurry when pregnant.
If your thyroid test results are questioned you should tell them you are selfmedicating. It would be wrong to waste their time and let them think you are hyperthyroid. Don't assume UK doctors will be familiar with acronyms like NDT. Tell them it is a combined T4+T3 therapy. If it is Armour, NatureThroid, Acella NP or Erfa show them the patient information leaflet.
BTA doesn't support T4+T3 therapy during pregnancy because they don't have evidence that it is safe. However, lack of evidence doesn't mean it is unsafe. I don't know whether T3 passes to the baby or not but I do know a member taking T3 only had a healthy baby.
You are not giving your child NDT you are taking it yourself. It's totally different to the example you mention above.
The TSH of women planning conception should be in the low-normal range 0.4 - 2.5. When pregnancy is confirmed dose is usually increased by 25-50mcg to ensure good foetal development. If TSH is low and FT4 is high it may not be necessary to increase dose. NICE also recommends that hypothyroid women planning pregnancy should be referred to endocrinology. cks.nice.org.uk/hypothyroid...
Management of primary hypothyroidism: statement by the British Thyroid Association Executive Committee
13. The serum TSH reference range in pregnancy is 0·4–2·5 mU/l in the first trimester and 0·4–3·0 mU/l in the second and third trimesters or should be based on the trimester-specific reference range for the population if available. These reference ranges should be achieved where possible with appropriate doses of L-T4 preconception and most importantly in the first trimester (1/++0). L-T4/L-T3 combination therapy is not recommended in pregnancy (1/+00).
Sometimes it seems to be forgotten that there must have been many thousands of pregnant women on NDT before synthetics were available but doctors are so anti these days, there aren’t many examples of it in use during pregnancy or a firm unified approach to what levels to aim for.
I would certainly hope to keep my TSH well within those ranges, however as I’ve always dosed based on symptoms and T3 level I am wondering if I should do the same in pregnancy. I have certainly read that free T4 blood tests are unreliable in pregnancy and total T4 is a better indication, but I am still unsure exactly what the levels should be and how to maintain them on NDT.
I do think a lot of the pronouncements from the BTA are flawed though, considering they don’t believe anyone needs treatment until their TSH is over 10 and they really have an anti-NDT stance. Furthermore, a former president of the BTA refused to even talk to me to discuss my case when I reached out trying to find a private endo to work with. (I didn’t know he was hugely anti-NDT when I approaches him).
I think I’ll have to own up if anyone asks, I am just not sure I will be confident enough to deal with an interrogation or emotional blackmail type stuff and I will be going to most if not all appointments on my own due to work commitments. (Not that my husband would be any use backing me up with these issues as he tunes out any time I talk about this stuff).
I might have to write a paper in advance that I can give to anyone that asks so they can follow the train of all my research and treatment to date and also indicate my testing regimen during pregnancy. It would be lovely if I could get my GP on board to do my testing but that is never going to happen since they have always refused to even test T4, never mind T3! I’ll just test every 4 weeks at my own costs so I can be sure I am properly dosing.
VitD is insufficient. Replete is >75 and optimal is 100-150. I would supplement 10,000iu daily x 6 weeks then reduce to 5,000iu alternate days and retest vitD in June. VitD should be taken 4 hours away from NDT.
B12 is bottom of range and possibly deficient. I suggest you pop over to healthunlocked.com/pasoc for advice as it may be sensible to rule out pernicious anaemia and commence B12 injections before pregnancy.
Folate is deficient. You should stop supplementing folate until B12 is normal and then GP should prescribe 5mg folic acid to be taken daily.
Ferritin is optimal halfway through range. You can raise ferritin by eating iron rich food. Liver once a week is particularly high in iron.
You may have missed in my mega initial post, all my vitamins and minerals are now fully optimised with the exception of Ferritin that I haven’t been able to get above about 79.
When I discontinued NDT the first time it was partly in the hope that correcting all my deficiencies would have been enough to drop the NDT but it wasn’t to be and my symptoms gradually returned.
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