I did really badly on levothyroxine so went onto t3 only and have felt great since the swap. But, my partner and I want to have a baby and my endocrinologist says I need to go back on levothyroxine. She told me to half my t3 dose to 25mcg abd then take 50mcg of levothyroxine. After the first week I came out in hives and then stopped and went back onto t3.
What is the best way to wean down the t3 50mcg dose and start the levothyroxine. I was most stable on 75mcg of levothyroxine abd was like that foe years before I started feeling terrible on it.
Any help would be greatly appreciated
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Lisaannette
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Can you share your recent thyroid blood tests and lab ranges with us Lisannette (TSH, FT3 and FT4)? What brand of Levothyroxine have you been prescribed? Have you tested key thyroid vitamins recently (ferritin, folate, B12 and Vit D) as having these optimal supports thyroid health.
You might find this link to a previous post useful
We don’t recommend multi vitamins on the forum. Far better to test key vitamins, post results on the forum for advice and then supplement as needed.
If your GP doesn’t complete all thyroid/ vitamin tests, I would try to do this privately (as many members do) for a better picture of your thyroid health.
The brand is almus. I previously had liquid thyroxine because of the hives but they haven't given me it this time. I don't want to ask the gp for liquid because it's really expensive.
The last t3 level was months ago and it was 4.0. I'm taking multivitamin but this is not prescribed just bought over the counter
Your blood tests will be skewed....low TSH and FT4 with high(ish) FT3 depending on dose. That scares "them" because their thyroid knowledge is often limited.
I need high dose T3-only and monitor by signs and symptoms.....resting heart rate, temp hand tremors etc. This happened after my pregnancies so cannot speak from first hand experience....
BUT...
You may find the following article helpful...it contains references to research so is based on fact not opinion!
The protocol suggested by your endo sounds rather harsh. If it makes you feel unwell again then I'd be questioning it's value. We need to feel well during pregnancy
Essential that you optimise nurients, particularly vit D, vit B12, folate amd ferritin, which support thyroid function.
Just adding in this info because endos are not always correct!!
I am taking 50mcg of t3. I was taking 75mcg a few months ago and felt great. My t3 levels have been hovering around 4.0 before than 3.9. My t4 was 2 last time they checked and tsh 0.03. My gp was OK about it. My endocrinologist doesn't seem to know much.
I have an appointment with the endo in June. Maybe I should ask them to check all my vitamin levels. She never did those since I first has a consultation with her.
I agree with Dippy Dame. Before doing such a switch back to levothyroxine which made you feel ill I'd want his rational & research to back his reason for doing this. Makes me feel uneasy. It would be worth contacting Paul Robinson & his group -T3 Only to see what people on T3 only have done during pregnancy. You will not be the first!
Oh that is interesting. How do I contact him? I have tried to research online but haven't found anything that I could use to show my endocrinologist.
My t4 is only 2 whilst I'm taking the t3. There was a point where I was in denial and my endocrinologist let me have a trial of meds and t4 went to 4 so I think my thyroid has nearly no function.
Scroll through her posts, and her (limited) info on her pregnancy starts about 6 years ago
.
There are a few people who have had babies when they were taking NDT (which contains T3, and doctors try to persuade women to stop taking this and take Levo instead).
Am sure Humanbean women got pregnant and had babies on NDT for years before the introduction of levothyroxine! I fact the T3 content has a much slower uptake and drop then with liothyronine.... so no sudden spikes. One can only despair at this nonsense.
Yes, I realise that. I was thinking about recent years when I referred to women getting pregnant on NDT, rather than women being on NDT from the 1890s to 1960s/70s/ 80s. It was a poor choice of wording.
Awww thought you probably meant something a bit different. 😂 🤣 Science is only as good as the scientists themselves... & we have a ton who seem to be prejudiced against any T3 beyond rational open thought.
Thank you for this. It is really helpful 🙂 I really don't want to go back to feeling awful on levo. I was so depressed on that drug. The side effects are awful.
Omg Thank you so much for this! I am actually moving to work in South hopefully this will help me..... especially since it is the own research of the hospital that will be local to me 🙏🙏🙏
There's a general 'wisdom' amongst endocrinologists that 'T3 doesn't cross the placenta' and so a foetus isn't viable or will be born a cretin if the mother is on T3 therapy with high dose T3 that keeps T4 low.
On the other hand women have been treated with NDT for over a century which has has proportionally much more T3 than is secreted by the thyroid. I've seen no reports of pregnancy problems.
How can these two conflicting observations be understood? The prime issue is the outstanding stupidity of many endocrinologists. Indeed some experiments on placentas have shown that little T3 crosses the placenta. These studies are done on donated placentas after delivery or abortion. They are not done on mid-term placentas because the baby would complain!
The baby relies on the mother to provide thyroid hormone during the first half of pregnancy. The placenta starts to supply nutrients at around 10 to 12 weeks. So, during the early stages of pregnancy there is no functioning placenta - nothing to stop T3. My guess is that as the baby starts to produce and regulate its own thyroid hormone the placenta starts to restrict T3, if it didn't the baby would not be in control. This is a guess because nobody has done any meaningful research, they just tell us that the bits of post delivery placenta they experiment on doesn't convey T3.
As an aside when levothyroxine therapy was being introduced they should have carried out studies to ensure it wouldn't harm the foetus. There was over 80 years of experience with NDT that showed it was OK but they didn't know if levothyroxine monotherapy would be safe.
There could be small differences in the comparative safety of levothyroxine monotherapy versus various T3 regimes. As far as I know there has not been any studies. If it were me I would hedge my bets and take some levothyroxine as well as liothyronine. T3 is about 3x as potent as T4. You probably know I'm not a doctor. It's a difficult subject made all the worse by silly endocrinologists who jump to irrational conclusions, fail to apply a bit of common sense to study outcomes.
Edited: removed NDT "has lots of T3 and little T4" and replaced with "has proportionally much more T3 than is secreted by the thyroid".
The prime issue is the outstanding stupidity of many endocrinologists.
Well said Jim!
High time the terror of ( correctly used) T3 was overthrown!
Looking back I suspect lack of adequate cellular T3 may have terminated my first pregnancy....but then again I'm convinced low cellular T3 is the genesis of so many health issues.
I'm with jim on this , if it was me , i'd hedge my bets and take some T4 (as well as the T3) for the duration of the pregnancy . then go back to T3 only afterwards
The body naturally gives T4 and T3 during pregnancy so in the absence of any decent research about what happens on T3 only with a very low T4 , i'd feel more comfortable /safe if i knew there was a reasonable level of T4 available for the baby to use if it needed to .
After the first week (of adding 50mcg levo) I came out in hives and then stopped and went back onto t3.
I'd suggest the body was sending out a message that it was rejecting T4 for some reason.
If levo is affecting health then is it the wise choice?
The only danger is likely to be over replacement of T3 with FT3 over range....but Lisaannette will be aware of that
T4 will be inactive until it is converted to T3 and reaches the T3 receptors in the nuclei of the cells.
What benefit has inactive T4 got to offer....it can't be utilised until it is converted.
Or does inactive T4 have a role to play? If so, what?
A T3-only pregnancy is probably fairly rare but does that make it wrong?
I would tend to listen to the body, Paul Robinson's referenced article, research papers and interestingly, now to FancyPants54 's post....and stick with T3.
BUT....
if in doubt and if T4 can be comfortably tolerated then add it as you suggest.
The final decision will need to be made by Lisaannette Once you have weighed up the available information....just don't feel pressured to go against your gut feeling
very personal decision isn't it .... mind you , if i was on 50mcg T3 only and wanted to add a bit of levo for pregnancy , i wouldn't do it by halving T3 dose . That's just asking for trouble . If it was to be done then ,Slowdragon's suggestion (lower T3 by 5mcg / add 25mcg levo etc) seems a more reasonable way to go .
I Wonder if that method would also have led to hives in the first week , or not .. and if trying another brand of levo would have been worth a try if the first one had this reaction ?
Slightly unrelated , but interesting re. babies /thyroid hormones, i stumbled across this the other day : "At birth, a newborn quickly adapts to extrauterine life by developing a state of relative overactivity of the thyroid gland .
A sudden burst of thyrotropin-releasing hormone and TSH release, reaching up to 70–100 mIU/L within 30 min of birth, leads to a two- to six-fold increase in circulating T4 and T3 concentrations.
TSH significantly decreases to within normal infant concentrations in the first 3–5 days of life, while FT3 and FT4 serum levels remain elevated for several days and act on tissues.
Thus, the interpretation of RIs of TSH and FT4 for newborns must take into account the gestational age and postnatal age up to one month old.
Thyroid hormone concentrations then decrease slightly during childhood and adolescence.
There is also a progressive decrease in thyroid T4 production, iodine turnover, and absorption with age, which produces an overall progressive decrease in thyroid function. The concomitant drop in TSH during this period suggests that it is the primary mediator of these effects.
Serum TBG concentrations increase up to age 5 years; this increase contributes to the gradual dissociation between FT4 and T4 .
Subsequently, the TBG concentration, which decreases between 15 and 16 years of age, results in a gradual decrease in serum concentrations of total T3 and T4." tandfonline.com/doi/full/10...
Which i suppose is why if i was planning on being pregnant , personally i would err on the side of caution where 'T3 only' is concerned .. not because i'm convinced that any T4 is definitely needed (i'm not ).... but just because thyroid hormones are complicated enough in adults and are different in babies/ children ... and the one thing we do know for certain about thyroid hormones is that we don't understand much of it yet .
the one thing we do know for certain about thyroid hormones is that we don't understand much of it yet
That sums it up and is the reason so many with thyroid disease are struggling....as are those treating them!
Patients need to be treated on an individual basis otherwise essential factors are missed. It takes time to join up all the dots and how many medics have the time ( or the skill) to do this during brief consultations. Their thyroid training does not give them all the tools they need...
Hormones....easy peasy. A little white pill will sort that out! Here, we understand that to be rubbish, and it's a battle far from won
I absolutely take your point about adding T4 during pregnancy but how, for example, might this affect those who cannot tolerate exogenous T4?
My own complicated experience of thyroid disease has taught me to first listen to my body because it will soon point out if something is wrong....but I guess that becomes another skill that has to be developed. Argh!!
T3-only pregnancies are relatively rare but evidence suggests they can be safe....in the end it depends on who one chooses to listen to.
but how might this affect those who cannot tolerate exogenous T4?.. Depends on the severity of the problem i suppose ... 'cannot tolerate' covers a very wide range of problems , from those which could themselves cause problems for the baby, to those which only make life difficult for the mum.
But if T4 can possibly be 'tolerated' , then I'm still tempted to err on the side of caution ... some babies get away without any adverse consequence from their mums doing 'unusual' things in pregnancy ... For the first 18 weeks of mine i drunk 6 Rum and Cokes on most days of the week + 30 roll ups ,and had a very poor diet .. mostly fresh cream apple turnovers and kebabs, and was still taking the contraceptive pill ........ That kid was fine and still is, age 33 ....... but nobody would take my case study as solid evidence that alcohol/ nicotine /poor nutrition is no risk to developing babies, we know for a fact it is , and that my son was just very lucky (i hasten to add i didn't know i was pregnant until 18 weeks, hence the continued pub visits)
I had hives on levo when I first started it and they reduced my dose and trued to increase slowly but the hives continued. They put me on liquid levo and it was a bit better but still not great.
Thank-you for the information. I appreciate your input 😁
I'm no expert but if Levo made you feel ill and T3 only makes you well, then I'd not give any more thought to putting Levo back in. Many women have babies on T3 only. I met a GP in London who had her baby at the age of 50 on T3 only. When I met her she was about 7 months, had just got back from a lunchtime run and barely looked pregnant at all because she was so fit.
There have been discussions here about it before I'm sure and definitely in Paul Robinson's FB group.
Hello Lisanette I hope you've found this thread thoughtful. I'd definately be contacting Paul Robinson & his T3 only group. I bet there's other women out there inT3 only who have manages their pregnancies who can offer advice & maybe a T3 friendly endo who will support you in pregnancy. I'd take your time to explore this further & go with your gut feeling on this. ❤️
What were your symptoms of being unwell please? I have been unwell for 12 moths after being put on LevoT 50mg. I have since had colonoscopy, endoscopy, scans etc and am now waiting to see a gastroenterologist. I have lost 4 stones in weight too and my appetite has gone. My worst sympton is insomnia. I went on to blood pressure medication at the same time and put my symptoms down to that, but I don't take that any more, just the Levo.
I had hives, swelling in my legs which then turned to swelling in my breast. Painful breast, feeling sick, weight gain, itchy eyes, headaches and it was all making me very depressed.
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