Tricky Thyroid Patient! Advice please. - Thyroid UK

Thyroid UK

120,893 members140,844 posts

Tricky Thyroid Patient! Advice please.

ElephantShoes profile image

Hello,

I have pasted my recent results below. Is anyone else known as a tricky thyroid patient?! These results are after a daily increase to 125mcg in July. My TSH has never been so low! However, I don't really feel any different. I feel 'flat' and fat! Still cannot lose weight and a couple of stones heavier than what I'd like. My Dr is really good I think and pretty receptive to my suggestions. He agreed to me trying a different brand to see if that helped. Was on TEVA now taking Accord and Mercury Pharma. Reading other posts on here, should I be trying to get my TSH under 1? Is T3 better a bit higher. Should I try alternate 125 and 150? With regards to vitamins, I currently take D3 and K2 Better You spray and Selenium with Zinc. I was taking combined B vits with Magnesium and Vit C but then read on here not to take Vit C with Magnesium so when I finished them I didn't replace. Any advice on how/when to take B vits and Magnesium is welcome please! I do have very stiff hips/legs especially on getting up. Thank you all for any advice you can give.

Thyroid function test (X77Wg) tricky thyroid patient Supplementary Result

Serum TSH level (XaELV) 1.02 mU/L [0.35 - 5.5] Supplementary Result

Serum free T4 level (XaERr) 18.2 pmol/L [10.5 - 21.0] Please note change to free T4 reference range. Supplementary Result

FREE T3 tricky thyroid patient Supplementary Result

Serum free triiodothyronine level (XaERq) 4.3 pmol/L [3.5 - 6.5] Supplementary Result

33 Replies

Hi ElephantShoes

I would suggest that everyone on here is known as a tricky thyroid patient!! That’s why we are here!

So you’re results…. This is my opinion only. I am sure others will come and post and most are far more knowledgeable than me but I’ll start 😊

Yes I would try alternating 150 and 125. You still have room to raise your t4 in a bid to raise your t3 but I do t think you convert very well. It may well be that you need to add in some t3 but that is more difficult that it seems so before you consider that I would start to alternate. I think this will lower your tsh and raise your t4 and you never know maybe enough to get some more t3.

I believe that tsh is involved in conversion to a certain extent and so by alternating you may be taking just enough to raise t3 a little more. You won’t know if you don’t try. Take bloods in 8 weeks and go from there.

With regard to vitamins….

I believe that’s a mine field and Greygoose did a fantastic guide. I will find the post and link to it for you.

healthunlocked.com/thyroidu...

This isn’t the one I was thinking of but it’s just as good. Think it’s the 9th post.

Batty1 profile image
Batty1 in reply to Yeswithasmile

I think of myself as unlucky then tricky.

I'm so tricky that I'm T3-only, buy my T3 and self medicate!!

We have arrived here because we are "tricky" and have often had a long, lonely and bumpy journey to recovery after support from here and much learning.... because medics failed us!

FT4 - 18.2 pmol/L [10.5 - 21.0]

Result is 73.33% through the ref range, this may be seen as good but it depends how it sits in relation to FT3

Because this is a reasonable level your TSH will have fallen and will be seen as good....but that is only part of the story. It is low because you have increased levo, that is just what happens

Low hormones = high TSH

High hormones = low TSH

When medicated TSH should be 1 or less.

Unfortunately medics are taught to focus on TSH which, research indicates, does no favours to hypothyroid patients

Incidentally TSH has nothing to do with conversion of T4 to T3.

TSH is a signal to the thyroid gland to increase or reduce production of thyroid hormones.

The T4 produced by the thyroid must then be converted to T3 most of which happens in the liver, but it also happens to a lesser extent in the heart, muscle, gut ( healthy gut bacteria is important), and nerves.

FT3 - 4.3 pmol/L [3.5 - 6.5]

Result is only 26.67% through the ref range which is far too low and the reason you are struggling

Both Frees should be approaching 75%

Your conversion of T4 to T3 is very poor

This may be improved by optimising Vit D, Vit B12, Folate and Ferritin and is the first thing you need to work on

If conversion doesn't improve after optimising these nutrients then you may need to add T3

FT3 is the most important lab, it is the active hormone and necessary to every cell in the body by way of an adequate and constant supply

I doubt that increasing T4 by another 25mcg would help much. It would raise FT4 and it may raise your FT3 a little but if conversion is poor it still won't be enough to adequately raise your current FT3.

With those results it's not surprising that you feel underpar. Your GP needs to up her thyroid knowledge, accept she needs to look beyond TSH and understand with poor conversion like yours you very possibly need T3. This will have to be prescribed in the first instant by an endo.

Weight gain and stiffness are typical symptoms of wrong and/or undermedication.

Forget TSH it's a pituitary hormone, not a thyroid hormone, and really only useful for initial hypo diagnosis.

You need to sort out that miserably low FT3!! If there isn't enough to saturate your cells then you will suffer....and you clearly are!

Options....,optimise nutrients, increase levo and test after 6/8 weeks if no discernable rise in FT3, which I suspect there won't be, then discuss the addition of T3 with this "really good" doctor and ask to be referred to an endo.

Good luck, hope you feel better soon.

DippyDame, a very informative post and whilst I’m not doubting your position I would say that there is an opinion that tsh is implicated in conversion of t3. Personally I have found it likely that my own conversion would have been slightly better on a lower dose of thyroxine before adding t3. Although I accept that it does vary from person to person which is why there is a need for t3 at all. I also believe that this implication of tsh and conversion declines with age which may also have been my problem. I am still looking for the papers that led me to this opinion but I will link when I find them! Obviously this is just my line of thought but I thought I’d clarify my position 😊

OK....and thank you.

My position is that of patient, not medical expert, so I am open to the accurate correction of any mistakes I may make.

However, since you state , ".. tsh is implicated in conversion of t3." I remain keen to find out how this might come about.

I look forward to reading the related paper(s)

Oh me too. Patient I mean. It wasn’t meant to correct a mistake, I just didn’t want to think I’d written something to someone that I didn’t think was right.

I will find the stuff I’ve read and link to it shortly hopefully 😊.

ncbi.nlm.nih.gov/books/NBK4...

This is one. Finally found it in an obscure folder named ‘heavy reading’ 🤣. There are others but they are more in depth 😱 Don’t know about you but my comprehension isn’t what it used to/should be. 😳🤯😳

I have another. Not specific to the tsh issue, fairly inclusive but more general. Same rules apply 🤯🤣

Thank you for taking time to find a link.I'm afraid my brain cells, like Elvis, must have left the room !!

It happens...often!

Maybe I'm missing something but I'm not seeing anything in this Paper that suggests that TSH is "implicated in the conversion of T3" or, that supports your understanding mentioned above that you, "believe that tsh is involved in conversion to a certain extent and so by alternating you may be taking just enough to raise t3 a little more"

TSH is, however, implicated in the level of T4 and T3

As I understand it TSH is a pituitary hormone not a thyroid hormone it stimulates the thyroid gland to produce T4 and T3. Once released from the thyroid gland about one-third of T4 is converted in peripheral tissues to T3 by the removal of an iodine atom ( de-iodination) the remainder converts either to rT3 or is metabolised.

This process of conversion does not involve TSH....although it could perhaps be loosely argued that unless T4 was produced in the thyroid gland by TSH stimulation there would be nothing to convert!!

I'm clearly not an expert, and like you, I feel it would be wrong of me to misinform so I'm going to link to greygoose who will know how to set us straight on this conversion point.

It really is a scandal that we have to brainstorm and to treat ourselves...we might be forgiven for asking, "what happened to (effective!) treatment from the cradle to the grave?"

Take care

DD

Oh how I appreciate your insight DippyDame! I’m with you though and as I said my brain cells aren’t up to much. Plus I have work tomorrow so it’s already past my bedtime! Lol

I will endeavour to find more files that I have saved tomorrow so watch this space…. I am hoping to that jimh111 may help too! I’m sure I have read posts by him suggesting such.

Bear with me although I fear I may have opened a can of worms here 😂 but yes you are right. We are left in a position where we have to try and fathom it all out ourselves 🤷‍♀️ But at least we have each other!! 🤞🏻🤞🏻🤞🏻

I really am going to bed 😆 but if you look under ‘cellular’ on that paper, I may have been confused but it seemed to me that tsh is the hormone and first messenger it connects with the receptor and sets a whole physiological process in motion. It isn’t as straight forward as just a feedback loop. The paper mentions cAMP and second messenger systems and it to me it read that this is connected beyond simply the stimulation of t4. If the dI02 gene is the cAMP responsive gene then there is a further implication in tsh/tshr beyond the pituitary. Isn’t there? Or am I just totally confused now 🤪

Good night! 😴

Actually DippyDame i think we have hijacked this thread. That isn’t fair so maybe we should start a new one for this? x.

Indeed....tomorrow is another day!

Apologies ElephantShoes

greygoose profile image
greygoose in reply to DippyDame

As far as I know, TSH does, to a certain extent, stimulate the deiodinases that bring about conversion. But, I don't know to what extent, nor the process. jimh111 talks a lot about TSH and conversion, so maybe ask him? :)

DippyDame profile image
DippyDame in reply to greygoose

Good idea.I didn't mean to stir the thyroid pot!!

greygoose profile image
greygoose in reply to DippyDame

I don't think you did. You asked a perfectly ligitimate question that needs clearing up. :)

DippyDame profile image
DippyDame in reply to greygoose

Thank you!

jimh111 profile image
jimh111 in reply to DippyDame

TSH most definitely stimulates / regulates deiodinase!

It is a cruical role of TSH but universally overlooked by endocrinologists and patients alike. Patients with a low normal TSH and low normal fT3 and fT4 invariably are very hypo. I kept a log of such patients from the forums and stopped after about 60 examples. I think it is the most common form of hypothyroidism where thyroid blood tests are 'normal' or near normal. It is also one of the most severe forms of hypothyroidism and difficult to treat because if you give a little hormone TSH falls further thus reducing conversion further - a vicious circle. This form of hypothyroidism requires mostly T3, a fact doctors can't get their head around.

I give full details here ibshypo.com/index.php/subno... . It's best to read all the way through this topic. Each webpage prints off quite well if you prefer paper. This webpage ibshypo.com/index.php/tsh-r... contains evidence of TSH regulating deiodinase but as I say it's better to work your way though the topic for a full understanding.

One futher piece of evidence I haven't put up yet is what happens in Graves' disease. Graves' is caused by TSH receptor antibodies (TRAb). The pituitary (and many other organs) have receptors for TSH. These TRAb 'pretend' to be TSH and so activate TSH receptors. As a consequnce the patient becomes hyperthyroid as there is excess thyroidal secretion. However, in Graves' there is a dramatic increase in T3. This is because the TRAb also activate the receptors in the thyroid and other tissues causing a large increase in deiodinase activity. This is a striking demonstration of the effect of TSH (or TRAb) on conversion activity.

Thanks for posting. Really interesting what you mention regarding low levels and being hard to treat due to the tsh and conversion.

I realise that there are many that take t3 only and many on combination but it does make you wonder what we do miss out on to not have much conversion going on.

I have wondered about reverting back to t4 but a lower dose to see if I could convert enough to manage without having to add t3 in. Jury is still out as I need to function. Don’t know if there is ever a good time to go backwards for a while though 🤷‍♀️Thanks Jimh111.

DippyDame profile image
DippyDame in reply to jimh111

Thank you jimh111

The reason for my question -

TSH is "implicated in the conversion of T3"

Should I have understood "conversion (of T3)" to also mean "deiodination" as in T4 to T3?

Sorry, I guess I'm just out of my depth here!

jimh111 profile image
jimh111 in reply to DippyDame

Diodinase is the scientific word for breaking down thyroid hormones. e.g. T4 to T3 or rT3 and T3 to T2. Very stictly speaking deiodinase is the name of the enzyme that does it. So T4 is converted to T3 by deiodinase.

The important points I would make are 1. TSH regulates conversion of T4 to T3. 2. Much of this conversion is done locally as tissues such as the brain regulate local T3 levels. T3 from these tissues enters circulation where we can measure fT3. However, T3 coming from local conversion of T4 is not the same as T3 coming from local conversion of T4 or from tablets. What I mean by that is the T3 is the same molecule but it hasn't come from those tissues that locally generate T3 from T4. It's a difficult concept but important, just adding T3 to the blood via tablets may not be enough, it restores blood levels but you haven't compensated for the T3 within organs that rely on local conversion of T4.

DippyDame profile image
DippyDame in reply to jimh111

Thank you jim that's roughly how I understood it to workI'm afraid semantics got in the way here...apologies!

I think of T4 as being "converted" but haven't related that word to T3 which I tended to think of as being deiodinised ....

I should have known better but clearly my old brain took a hike!

So it's the same thing, which means " TSH is implicated in the conversion of T3"

Certainly Dippy there!!

Appreciate the clear explanation

jimh111 profile image
jimh111 in reply to DippyDame

Yes, that's it.

StPetes profile image
StPetes in reply to jimh111

Thanks jimh111, for this very clear explanation.

SlowDragon profile image
SlowDragonAdministrator

Looking at previous post

healthunlocked.com/thyroidu....

High thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s

B12 on low side

No folate, ferritin and vitamin D results

If not already on strictly gluten free diet

Have you had coeliac blood test done yet?

If not request coeliac blood test, vitamin D, folate and ferritin tested

How long have you been on 125mcg levothyroxine

Was test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Approx how much do you weigh in kilo

Guidelines on dose levothyroxine by weight is approx 1.6mcg levothyroxine per kilo per day

"Tricky Thyroid Patient" 😂😂😂 Interpret as "Patient has been reading" and hopefully GP was being supportive in trying to get the lab to test T3 too. I'm surprised they did.

I couldn't help but notice that on your previous post blood results you were noted as "Complex Hypothyroidism" What will the GP put on the next lot?

I also noted that your MCV was 94.9 so, here's another snippet for you:

"If results of the FBC show a low haemoglobin and low mean cell volume (MCV) check the ferritin level — check the ferritin level in all people with an MCV less than 95 femtolitres. "

cks.nice.org.uk/topics/anae...

And they really do need to check Folate & B12 too. Vit D is much harder to get the NHS to check, but maybe your GP has the perfect phrase up his/her sleeve to get the lab to do it.

Thank you Yeswithasmile, DippyDame, SlowDragon and nellie237 for your comments and advice. I will check out the link to vitamin and mineral advice. I have had tests in the last 6 months for Ferritin 50.8 (10-291) B12 421 (211-911) and Vit D 76.1. I tested negative for Coeliac. I haven't had Folate done. My last test was fasting and 24 hours since last Thyroxine. I weigh about 76kg. I am working with my Dr to try and manage my underactive Thyroid with Thyroxine. He has contacted the Consultant Endocrinologist at my local hospital for advice on this matter. Her response was as follows:

...I increase thyroxine in order to achieve a TSH of 0.3-2.5mU/L...I usually also exclude other causes of fatigue, in particular, other autoimmune diseases (I presume she has Hashimoto's Thyroiditis).

Routine monitoring of T3 is not helpful in guiding thyroxine replacement; TSH is the biochemical parameter that best reflects thyroid hormone metabolism and action in tissues (albeit specifically reflective of pituitary thyroid hormone status).

If she felt no improvement on an increased dose of T4 we could try additional T3. Please note, if the trial of T3 was beneficial, we would ask primary care to take over the long-term prescription of T3, so we cannot commence a trial without agreement that continued prescription, if necessary, would be undertaken with your practice.

Thoughts? Advice? Thank you!

SlowDragon profile image
SlowDragonAdministrator in reply to ElephantShoes

Ferritin 50.8 (10-291)

B12 421 (211-911)

Vit D 76.1.

You need folate tested

So what vitamin supplements are you currently taking…if any

Ferritin is too low but not low enough for GP to prescribe iron supplements

Look at increasing iron rich foods in your diet

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin

healthunlocked.com/thyroidu...

Never supplement iron without doing full iron panel test for anaemia first

Iron and thyroid link

healthunlocked.com/thyroidu...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

When will they understand that comparing the levels of the Frees is important once a diagnosis has been established.

Routine monitoring of T3 is not helpful in guiding thyroxine replacement;

Ouch!

T3 is the active thyroid hormone, we need to know how much is circulating around the body!!

TSH is mainly useful as an initial diagnostic tool to identify hypothyroidism, not as a guide to dosing.

An explanation

thyroidpatients.ca/2019/09/...

Fortunately she suggests that if an increased dose of levo is not beneficial then they might consider a trial of T3. However that trial needs to be long enough to allow for any necessary titration and that takes time, which is not often allowed. The result being that the patient's test is set to fail.....perhaps good to be aware of this.

Take care

DD

SlowDragon profile image
SlowDragonAdministrator

Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but a further 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal

As your result is negative for coeliac you can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits. Can take many months for brain fog to lift.

If no obvious improvement, reintroduce gluten see if symptoms get worse.

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

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

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Thank you SlowDragon.

So what vitamin supplements are you currently taking…if any

Currently taking Vit D+K2 Spray and Selenium plus Zinc. Looking to buy Igennus Super B and a Magnesium supplement.

SlowDragon profile image
SlowDragonAdministrator in reply to ElephantShoes

GP should test folate levels first …ideally

Will request that at my next bloods 👍

You may also like...