Thyroid perixidase 281. iU/ml (0-34) this has gone up since June when it was 238 iu/ml
I haven't retested ferritin etc but in July it was 150 ug/L (15-300 ug/L) and folate was 11.1 ug/L (4.6-18) and B12 was 1194 (180-700 ng/L) and vitamin D was 112.6 nmol/L -I've been supplementing with Better You spray (2 sprays per day) since August
In June
transferrin was 2.93 (2-3.6)g/L and iron was 24 (7-26) umol/L
I've been on levothyroxine for 15 years and am on 75mcg 4xweek and 125 3xweek
I've been on antibiotics for Lyme disease but I've decided to stop as I'm not sure they are benefitting me & they are causing gut issues. So I'm taking a break.
My main symptoms are still
Tingling/heat in arms & hands & lower legs & feet (these are intermittent ) knee joint ache, occasional weird muscle ache (e.g. In buttock); pressure tightness in head (again all intermittent) and lacking in life/energy & low mood, losing more hair on washing & weightloss and poor sleep. I have cut out gluten and dairy so that might explain weight loss
I haven't felt like my usual upbeat energetic self for months and put this down to Lyme disease (I tested weak positive on a German lab test) but in the back of my mind I wonder if it could be more of a thyroid issue? It's probably a combination except the private neurologist and GP told me these are not thyroid symptoms.
I think my conversion from T4 to T3 is poor based on what I've learned from you all but is it enough to make me feel so bad? I think I used to convert ok as I never had any issues on levothyroxine for last 15 years
I'm waiting to see a private endo but my appointment is not until 10 October
Any advice anyone? Thanks v much
Polly
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Polly91
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Yes, your conversion is poor. And yes, your FT3 is certainly low enough to be causing a lot of problems. Don't listen to doctors when they say your symptoms aren't thyroid, unless they can prove they're the symptoms of something else. Doctors know nothing about hypo symptoms. And, given that T3 is needed by every single cell in the body to function correctly, anything and everything could be a hypo symptom unless proved otherwise. They just don't like increasing doses, for some reason, and certainly don't like prescribing T3. So, you might have to buy it yourself. But it would be worth it, I'm sure.
Well, they're not typical hypo symptoms but no reason why they shouldn't be. When doctors think of hypo symptoms they think of fatigue and weight gain, that's about all they know. But, there are over 300 proved hypo symptoms - and by proved, I mean they got better when the person was optimally treated. I don't know the list by heart but I did post it some time ago. This is the link I gave :
I really no nothing about getting T3 from France or Germany, but I think you can do it if you get a private prescription. I know some people get it from an on-line German pharmacy - France is more difficult. You would have to write a new post, asking just that.
All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results.
Is this how you did the test?
Your TSH is too high
FT4 is fairly high (perhaps you took Levothyroxine before test?)
FT3 is too low
You have an odd dose regime
4 x 75mcg plus 3 x 125mcg = 675mcg a week
7 x 100mcg would be a lot easier and only 25mcg dose increase a week
You possibly need higher increase than that. Perhaps 100mcg and 125mcg alternate days
Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.
Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine
Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients
You say you have gut issues.
As you have Hashimoto's Are you on strictly gluten free diet?
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
It might. But it might just lower your TSH and improve your low FT3
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 at
It's a long shot but with your good fT4 combined with highish TSH and lowish fT3 it's possible you have poor conversion caused by selenium deficiency. If you haven't tried it I would try supplementing with selenium for a little while and see if you improve.
Increasing your levothyroxine would be counter productive as high fT4 levels do not help due to the effects on deiodinase.
It's also possible your deiodinase is reduced due to poor diet. I would resume gluten and dairy, there's no evidence they have any benefits other than for abdominal symptoms and you may be missing nutrients as a consequence of a restrictive diet.
If the above does not work then I would try some T3 medication but I would rule out the above options first. It's better to find the route cause than resort to treating the symptoms, so see if selenium and a better diet works before resorting to T3.
You’re the first person I’ve heard saying that abou gluten (and dairy ) - aren’t they supposed to cause autoimmune response in anyone with a leaky gut (which I may have as I’ve been on antibiotics).
I’d LOVE to eat cakes bread & yoghurt etc again. I miss them ! But don’t want to get worse although I don’t seem to have got any better since cutting these out so maybe I’ve not got much to lose? Interestingly my TPO antibody has gone up in last 3 months & with a gluten free diet I would hope it would have gone down.
I can certainly try selenium to see if it makes a difference. Any advice on dose & how long it would take to make a difference?
Once you start on T3 can you stop or do you need to take it for life?
Great idea. Someone recently suggested that camels milk is the best!!! Has the most nutrition & best for immunity but I think I will start with goats milk!!
TPO levels fluctuate, once the thyroid is gone, destroyed or surgically removed TPO levels tend to fall after a while. The RDA for selenium is 55 mcg so I would supplement around this level up to about 200 mcg, no more as too much selenium is bad. The biological half-life is around 100 days so it will take a few months to build up if you are deficient. Selenium helps with immune function so it might help stop your TPO levels going up, I'm not too sure about this as the question arises as to whether improving immune function would actually help with an autoimmune dysfunction.
If you start on T3 you can discontinue it but don't suppress your TSH if you can help it.
I’ve heard a Brazil nut a day gives you enough selenium for RDA so I could start with that?
I think strengthening your immune system is actually meant to be good for autoimmune conditions even though this may feel counterintuitive. I think the idea is the immune system corrects itself if it’s in optimal health.
What do you consider to be suppressing Tsh too much? <0.5?
I heard about Brazil nuts but apparently they vary considerably in selenium content, so it's best to use a supplement or multivitamin.
I can't give an absolute number for suppressing your TSH but I wouldn't go below 0.2 if you can help it. This is a guess on my part. When TSH is kept suppressed for many months it can cause the TSH to be permanently lowered, in jargon the 'axis is down regulated'. You want to try and avoid this which is why I'd try not to suppress your TSH.
Liothyronine (L-T3) is the active hormone and it has a shorter half life than T4 so it's best to take it in two doses daily, morning and bedtime. There is an increased risk with taking T3 because you are bypassing the T4 to T3 conversion - the body alters conversion rates to keep stable T3 levels. So, by bypassing this mechanism you take on extra risk. However, patients on T3 tend to monitor their condition more carefully and the little research there is does not show worse outcomes for patients on T3. I think the extra care taken by doctors who prescribe T3 more than makes up for any extra inherent risk.
The downsides are practical. The need to split doses. Above all the difficulty of getting a doctor to prescribe and the cost of UK liothyronine.
I would give selenium a try first, you can take higher doses for a few weeks and then drop down to 200 mcg daily. if that doesn't work then you can try and persuade your doctor to prescribe liothyronine and reduce the levothyroxine.
In healthy people their thyroid secretes T4 and T3. About 20% of their daily T3 comes from thyroidal secretion and the rest is converted from T4 by various tissues. Beyond that it gets very complicated!
V enlightening thank you SD. You & many others on this forum never cease to amaze me with your knowledge. So leaky gut and poor nutrition & digestion due to low stomach acid are the main culprits for not converting well - makes sense for me as I know I’ve had digestive issues especially after 2months of antibiotics.
I will take a look at the film. Thanks for sharing
I think the gut is linked to so much including brain as well as autoimmune conditions. I’m getting a GI map study done - have you or anyone had that done before ? (Stool samples analysed)
This video is a wonderful presentation but contains numerous errors: -
TRH does not stand for ‘Thyroid Releasing Hormone’, it stands for ‘Thyrotropin Releasing Hormone’. Thyrotropin is another name for Thyroid Stimulating Hormone (TSH).
Most T4 to T3 conversion does not take place in the liver. About 70% of T4 to T3 conversion is the result of type-2 deiodinase (D2) which occurs in the brain, skeletal muscles and other tissues. The liver has type-1 deiodinase (D1).
The comments about needing stomach acidity to enable gut reabsorption of T3 metabolites is misleading. Firstly, T4 and T3 and their metabolites are subject to entero-hepatic recirculation – eliminated by the liver, passed into the duodenum via the biliary tract and reabsorbed in the gut. T3 being the smaller molecule is more easily absorbed than T4. IF there were impaired entero-hepatic recirculation of thyroid hormones T3 and T4 blood levels would be lower causing TSH to rise. Secondly, the liver passes thyroid metabolites into the duodenum via the common bile duct, along with pancreatic enzymes and bile. Thus, stomach acidity may not be relevant, the stomach is bypassed, and the pancreatic enzymes neutralise acidity, otherwise the patient would have duodenal ulcers and inflammation of the small bowel.
He talks a lot about high TBG levels holding onto T3 but fails to point out this would lead to low free T3 / T4 levels and hence a high TSH. The T3RU or ‘T3 Uptake’ assay has been replaced by fT3 which takes the guesswork out of knowing how much T3 is available. Similarly if deiodinase or receptor binding was affected by nutritional deficiencies this would also apply to the pituitary resulting in high TSH levels.
This is another webpage that mixes up fact and fiction leaving the patient to work out what is correct. Personally, I tend to avoid presentations by doctors who wear a white coat, scrubs, stethoscope or those strange mirrors on the forehead. When the presenter is resorting to props I get suspicious.
So in layman’s terms if your gut microbes have been altered due to long courses of antibiotics would the gut hepatic recirculation be impacted with the possibility of low T4 to T3 conversion especially if TSH high (>3) and T4 on high side too but T3 on low side.
I’m just trying to figure out what has been going on in my struggling body over the last 4minths or so?
Personality change/low mood is something new & I just feel it’s biochemical (could be Lymes too but it’s got worse after antibiotics).
Doctors just aren’t interested in joining the dots.
I can't see how microbes would affect T3 or T4, they are just small molecules. The video suggests reabsorption of T3 can be affected but doesn't mention T4 or how T3 would be more affected than T4 (we might expect the opposite).
I would try selenium first and have a varied diet. If that doesn't work try to get liothyronine prescribed.
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