Advice on results please: Hello experts Could I... - Thyroid UK

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Advice on results please

Hello experts

Could I get some advice on latest results.

TSH 3.07 mIU/L ( 0.27-4.2)

FT4 20.2 pm/mol ( 12-22)

FT3 4.0 pmol/L. (3.1-6.8)

Thyroglobulin antibody 22.2 IU/ML ( 0-115)

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

42 Replies
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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. :)

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Thank you GG. This is what I suspected.

Is there any symptom that definitely doesn’t look like it’s thyroid related ?

If your T3 was below the range eg under 3 would nhs prescribe T3?

I’d prefer to buy from Germany or France if I can’t get from private endo - do you know if I can do this through a UK wholesaler ?

Thank you Polly

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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 :

hypothyroidmom.com/300-hypo...

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. :)

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Thank you GG

My goodness that is a long list & virtually everything I’m suffering is on there.

I will write a new post re supplies when I’m close to making a decision on T3.

Thanks again

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You're welcome. I'm glad it was helpful. :)

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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.

verywell.com/should-i-take-...

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

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

Antibiotics wipe out good gut bacteria. Are you taking a probiotic

It's relatively common to find our conversion gets worse with age / menopause/ gut issues etc

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Sorry my mistake I’m on 75mcg most of the week and 100mcg 3 days per week.

I did not have my morning Levo dose before my test so it was about 26 hours since last dose of Levo.

I am strictly gluten free (since August ) and am taking probiotics. I’ve had the coeliac test & im not positive (nor even close ).

Thanks p

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Most of us aren't coeliac. That's just one variation on gluten intolerance

See my profile for how it's often not clear cut

Ask GP to increase Levothyroxine to 100mcg daily

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Thanks. But won’t that make my T4 go over range ?

Coeliac screen was 0.3 u/ml (9-10.9)

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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

tukadmin@thyroiduk.org

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Thank you

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Thank you SD- I’ve just looked at old results & on 29 June my TSH was 0.74 (0.27-4.2) and T4 was 28.7 (12-22) and T3 was 4.2 (3.2-6.8).

I was taking 100mcg thyroxine per day at that time.

I was told I was over replaced. So cut back on levothyroxine.

Do these results look better & is a TSH of 0.74 considered suppressed ?

I wish I could remember how I felt but I don’t recall it being a lot better than now? Perhaps mood was a bit better.

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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.

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Thank you jimh

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?

Thanks v much

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Literally thousands on here find gluten free diet helps

Some also find dairy free beneficial

Retesting antibodies after 3-6 months may show if TPO antibodies levels have dropped

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My TPO went up after 2 months of gluten fre diet.

Not sure why?

So far no change insymptlms with the absence of gluten & dairy. But maybe I takes more than 2.5 months.

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Considering your TSH risen a lot (from .74 to 3.07) since having dose reduced, not surprised TPO has risen.

If you have not noticed any improvements being dairy or gluten free then suggest you reintroduce one. Probably dairy.

See if you notice any worsening of symptoms.

Then do same with gluten, perhaps a month later

But considering you have also had dose reduced it's always difficult to asses if more than one thing has changed

Suggest you get DIO2 gene test and do it now, so that you have results for endo appointment

It takes 15 days to get results.

thyroiduk.org.uk/tuk/testin...

Assuming test is positive is a very strong argument for being prescribed T3 alongside T4

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Thank you v much. Is the DIO2 gene a blood test?

That’s a v good point about TPO going up if TSH has gone up so much!

Good idea re dairy. I might try yoghurt or in meals rather than straight into milk.

Thanks x

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DIO2 is a spit test, so very easy

(Though you need quite a lot of spit, takes 10-20mins)

Post off. Takes about three weeks to process

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That’s easy (although I did a cortisol profile recently & it took me 15mins to just get 3ml sputum!

Can it be any time of the day?

I will check your link to see prices & best lab to use.

Thank you x

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It’s suggested that if we react to dairy it’s often casein found only in cows milk

Perhaps try goats milk/yoghurt/cheese first

Then lactose free milk

Then any dairy

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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!!

X

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Can you buy lactose free milk in supermarkets? Is it cows milk or goat ?

Thx

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Lactose free is cows milk. You can get lactose free yogurt and cheese in large supermarkets

Lots of goats milk available. M&S goats milk was the most like cows milk, I found, in my brief trial of dairy free

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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.

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Thank you.

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?

Thanks

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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.

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Thanks Jim

I supplement with zinc but could replace that with a zinc & selenium one instead.

Interesting about TSH suppression.

What are the risks/downsides of taking T3? Have you taken it?

Thanks

P

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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.

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Thank you Jim- v helpful.

How does the T4 to T3 happen in people who don’t have thyroid issues? Do they produce T4 naturally which all or some gets converted ?

Sorry to sound thick!

P x

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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!

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Thank you Jimh - this is useful info.

X

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Here's a short film on how it roughly works

drbradshook.com/understandi...

Many people struggle to convert T4 well enough to T3

Lots of things to upset the process

Low vitamins

Low stomach acid or poor gut function

DIO2 gene variation (Approx 16% of thyroid patients have DIO2)!

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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

X

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Most medics seem completely unaware how interconnected thyroid and gut are

Endocrinologist think gut function is not their interest/expertise/remit

Recent research suggests autoimmune diseases may actually start with leaky gut.

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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)

Thx

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No. I had endoscopy. Gluten intolerance confirmed. Probably not coeliac but even extremely expensive DNA test was ambivalent

See my profile

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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.

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Thank you Jimh

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.

By the way I agree with you about doctor props!

Thank you v much x

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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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I support the point made by SlowDragon that the T4/T3 conversion rate gets worse with age.

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Getting older is so much fun ! Not.

😢

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