I am a doctor and clinical researcher in UK. My girlfriend, currently based in Sweden, but from Germany, was diagnosed with hypothyroidism in early 2016. She was prescribed 50mcg by her GP in Germany based on TSH, FT4 and FT3 results which she only got to see months later. Suffice it to say that it has done nothing. She has since put on 10kg and has begun losing a lot of her hair, which she loves growing out. So essentially a part of her identity is being swallowed. She sleeps through her alarms and is perpetually cold.
With my background, I understand the physiology a little better than a layman, but by no means better than most of them. However everything I've read recently on the science leads me to believe she will need to start a small dose of T3. With the help of a fellow doctor (endocrinologist), I have slowly made her increase her T4 dosage to 100mcg to see if there are any changes in symptomatology, and we have recently gotten blood tests as well, though we are still awaiting results.
I foresee that we will seriously need to consider T3 treatment, while I and my colleague make sure to helpher with basal temperature monitoring, heart rate, ECG and BP checks, and blood tests with careful titration. I do NOT foresee her GP prescribing it. And the UK is absolutely useless at prescribing it due to the cost of the medication. My friend herself admitted she wouldn't for cost reasons.
I understand that people here cannot disclose where to get T3 from in Europe or elsewhere on the forums. But could anybody help us out via PM?
Thanks.
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JT13
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First you need to establish if she has Hashimoto's
Most likely as over 90% of primary hypothyroidism is Hashimoto's
50mcg is only a starter dose. It should be increased in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range
Under medicated leaves us with low vitamins too
Essential to test vitamin D, folate, ferritin and B12
Add results and ranges for Thyroid TSH, FT4 and FT3, plus thyroid antibodies
Plus vitamin results and ranges too
For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested
See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results
I will post the most recent values as soon as I have them.
I don't however, expect the GP or endo to respond to our request for T3 even if results suggest that's what is needed.
Hence why I'd like to know what to do in case they don't prescribe it. Trying to get ahead of the typical back and forth between patient and doctor. 10kg when she runs 40 miles a week is not on.
Thanks again for the link. Will check that out as well. Are you aware of anywhere in the EU we might be able to get T3 should we be shot down? It seems to be the pattern from everything I'm reading. Even my endocrinologist colleague says that we are likely to get shot down. So I'd appreciate the help.
We need your medical expertise to help get thyroid treatment improved. There are literally thousands whose lives are completely blighted by current mismanagement and poor treatment
NICE guidelines are currently under review. Due to publish autumn 2019
The number of patients left on 25mcg or 50mcg is heartbreaking
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne: tukadmin@thyroiduk.org
Prof Toft - article just published now saying T3 is likely essential for many
I somehow missed seeing this post SlowDragon . Sorry about that.
I am now acutely aware of the situation. I am looking at now being able to support the cause is whatever way possible. This all seems more than a little ridiculous to me.
SlowDragon and anyone else who would like to help out: I have just been provided my girlfriend's Thyroid Function results as of 02/01/2018. I know a lot of time has passed since that date but the results are from her GP's practice in Germany, and she is now in Sweden.
02/02/2018
TSH basal - 5.05 (0.35 - 4.50)
Free T3 - 3.5 (2.0 - 4.2)
Free T4 - 1.0 (0.8 - 1.7)
Her TSH level is very worrisome to me.
Currently she is taking 100mcg of levothyroxine. But at the time of testing (02/01/2018) she was on 75mcg, coming up from 50. I personally suggested the increase purely based on symptomatology (weight gain continuing, not waking up, feeling more and more tired), as it was impossible to get her over to Germany for testing. Since then she doesn't think she feels any better however. I suppose one good thing is that the weight since Christmas has been stable. But she still feels like no amount of exercise will get the weight off, and she does a lot of it.
Just so you know how badly this has been managed, I actually had no idea she was taking levothyroxine for nearly half a year, because nobody impressed upon her the significance of being diagnosed with it, and she didn't feel she needed to tell me (as is her right).
Her last blood tests (a large panel which also included thyroid function) before these were on 17/06/2016. TFTs here:
17/06/2016
TSH basal - 4.43 (0.35 - 4.50)
Free T3 - 2.7 (2.0 - 4.2)
Free T4 - 1.2 (0.8 - 1.7)
Before that she took a similar full panel on 11.04/2016
11/04/2016
TSH Basal - 2.3 (0.35 - 4.50)
Free T3 - 2.6 (2.0 - 4.2)
Free T4 - 1.4 (0.8 - 1.7)
Based on these results, it would appear she doesn't have a conversion problem. Would that be a correct assessment? Would I be right in assuming that she should take 100mcg now for a month or so until we get another panel of thyroid tests? Is T3 necessary as it would be more reflective of the euthyroid state?
Also, because Slowdragon mentioned this, I have some results for Vitamins from her 17/06/2016 panel:
Vitamin D3: 44.8 (>20ng/ml)
Vitamin B12: 438 (for some reason the range is not on the lab report, but I will try and find out by calling them).
I plan on asking her to fly over to either Germany or the UK (whichever is cheaper) for a full panel including everything you mentioned I should ask her to test, Slowdragon.
Thanks all. Do let me know what you think. I apologise for the late provision of results, as I just got them. It has been a stressful time personally, and a busy time professionally.
It would be really helpful if you could edit your post with the lab results to add the ranges. Most people will be looking at this on their phones and it will make it much easier to see what's going on. If you click on the little arrow sign to the right of the 'Like' button, it will give you the option to edit.
Had she started taking Levothyroxine at 50mcg for tests on
11/04/2016
17/06/2016 ?
Her test results from 02/01/2018
How long had she been on 75mcg before this test?
The general rule is minimum of 6-8 weeks, between increase in dose and testing
TSH is too high, but FT3 looks OK and FT4 is quite high
We can't rush putting the dose up. The body needs time to adjust
You may find increasing to 100mcg might push FT4 over range. Provided she doesn't feel hyper, stick on it and retest after 6-8 weeks
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results
Always take Levo on empty stomach and then nothing apart from water for at least an hour after.
Many take on waking, but it may be more convenient and possibly more effective taken at bedtime
Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits, best to make sure to only get that one at each prescription. Especially watch out for change of brand if changing dose.
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
Her lab results are not terrible. The TSH is obviously high, but we often see TSHs of 30 or more here, so not as bad as some. The normal ranges are just that, ranges of normality, in that unless we know what her normal TSH etc was prior to her thyroid playing up, we don't know how much is has changed. What is normal for one person may not be normal for the next. Mine only got up to 5.6 and I felt very run down & used to fall asleep inconveniently.
Generally, a freeT3 in the upper third of the range would be good aim, and a freeT4 at least half way (although others / admins may have more specific suggestions)
The goal TSH for someone on Levo is under 1, so your GF was definitely undermedicated at the time of the last test. It takes between 4 and 6 weeks for the effect of any raise to fully kick in due to the long half life of thyroxine, so it would be sensible to retest again once that time has elapsed since her last raise, and add another 25mcg then if required (then retest in another 5 or 6 weeks and so on)
Would you recommend doing just this for now? I can get some repeat bloods while she is here in the UK the middle of next month (will be 5-6 months by then).
Should we simply stick with levothyroxine now and not bother with T3 just yet? Would it help to improve her TSH levels to start on a small dose of T3 (5mcg) along with her current dose of levo?
If it were me, I would try and get better levels using Levo only to start with. Once you start using T3 there are a whole new load of things to juggle. When I added 5mcg T3 my levels actually got worse as my own conversion lessened, and didn't get to a decent level until I was taking 20mcg per day in split doses. This is known as the negative feedback loop.
Have a look at the Medichecks website. They do offers on some thyroid tests each Thursday and are reasonably priced. You get a short Drs report with results and if you have any queries you can ask for one of their Drs to give you a call back. They are very helpful, so if you have any queries about choosing a test pack you can give them a call.
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