Can't talk to Doctor "If you have a Thyroid Problem, I'll eat my Hat." Can anyone help with my crazy results....

[Gilbo72]

Hello, I am new here…. So I have been enjoying the benefits of suffering from a misbehaving thyroid gland for the last 10 years or so, since a very traumatic birth experience and subsequent surgeries that I believe led my body into an autoimmune disease state. I had no energy. I was retaining water, my hair fell out to the point of going bald, I had thick scales down the front of my shins, my nails on my hands started to fall out. But the flu-like ache was the worse. Every time I over exerted myself I would collapse, feel fluey and take weeks to recover.

In that time, I have had the pleasure of having a lovely GP (who knew me, my history and listened and trialled me on thyroxine), a year in a foreign country (Greece) which had great blood-testing facilities but I doctor who told me I wasn't fat enough to have a thyroid problem(!) so refused to carry on the prescription. To back to an old dinosaur of a GP who has told me 'If you have a thyroid problem, I'll eat my hat, you obviously have panic attacks, and let me see, after years of testing you and your TSH being out of range, you have CFS and not a thyroid problem (even though an endocrinologist suggested my CFS symptoms were in fact due to an underactive thyroid).

I am now labelled as neurotic, and one of 'those' that suffers from a non-diagnosis of CFS, so everything is caused by that.

Luckily for me, after enjoying a jolly of 10 weeks of a CFS pain management course, a course of B12 injections and an endocrinologist and the CFS consultant both agreeing Levothyroxine (and the NICs lowering the TSH range a few years back) could help I finally got back on to a prescription that steadily increased from 50mcg to 112mcg, over the last few years.

The problem is the old dinosaur is still hanging on. Refuses to except I have a thyroid problem, much prefers to think I am neurotic, and anxious. (Because his speciality was endocrinology back in the dark ages don't you know). And we now have a love hate relationship where I try to avoid him, and he hangs up on me when we have our annual check-up phone call where he tries to reduce my prescription. (Please don't suggest I get a new doctor, I'm out in the sticks, sadly he is the best of the bunch… we have a sort of understanding…)

Anyhow, I have my life back to some extent, I am running 5-10k regularly, and back to pretty good relative to how diabolical I was. However, like everyone I am not perfect. My body is stiff and achey all the time, no amount of stretching or hot baths helps. I am slowly but surely putting on weight and unable to shift it. 8st 5lb to 10st 2lbs. Exercise I have to build up to and acclimatise. My hair still falls out, but only sporadically, and I still get bouts of feeling fluey occasionally (but not to the same extent). (I am now gluten free and I do think that and my supressed TSH is what has helped with that.)

I have been on 112.5mcg of levothyroxine for a couple of years. My TSH is suppressed and my free T4 is elevated. But I feel best on this. (not perfect but the best I can.)

I have a load of results that I would really appreciate you all run your eye over and give me your opinions. I, like many here wondered if it is a conversion problem or a reverse T4/3 problem(??) not really sure what that is…

or maybe I really don't have a thyroid problem!... and he was right after all...

I hope you can see the attached pic of my results. Anyway, here goes….

[SlowDragon Administrator]

Well of course you have a thyroid problem, because your TPO antibodies are high. This is autoimmune thyroid disease also called Hashimoto's

Hashimoto's causes TSH to go up and down as antibodies attack the thyroid

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's

Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise

Your FT4 is high. There's no FT3 results. You need full Thyroid and vitamin testing

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

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

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 ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function 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 over 80% find gluten free diet helps 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 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...

thyroidpharmacist.com/artic...

[Gilbo72 in reply to SlowDragon]

Hi SlowDragon, thanks for the response. I am intending on getting a private test done, but thought it would be interesting to compile all my test results to date to see if there any clues. I am strictly gluten free and have tried to ‘heal’ my gut. Unfortunately Dr Old only ever saw the antibody results that were nothing to be concerned about. The earlier results that were more comprehensive were done in Greece, so the UK GPs weren’t interested. Didn’t even want to look so they are not actually on my NHS notes. You say I have no T3 results, but do you mean I don’t have any that correspond with a suppressed TSH? Kind regards!

[Gilbo72 in reply to Gilbo72]

Also they have tested for Coeliac, and every other immune disease and glandular fever. My cretanine levels always seem to be on the high side.

[Baobabs]

What's your doc's hat made of because he's going to be devouring a lot of fibre.

[Gilbo72 in reply to Baobabs]

Hee hee. Old git flavour. I am quite fond of him you know. We just don’t see eye to eye on this....

[Baobabs in reply to Gilbo72]

Surprise, surprise!

[greygoose]

So, on your last test, you were having a Hashi's 'hyper' swing. I take it you know all about Hashi's?

And, like so many Hashi's people, you do have a conversion problem - forget rT3, not helpful, but it will be high at the moment, due to your high FT4. And, the only thing you can do about that is add some T3 to a reduced dose of levo. I wonder what the dinosaur would make of that! I should buy him a bottle of ketchup or something, to help the hat go down!

[Gilbo72 in reply to greygoose]

Thanks Greygoose. Well I wouldn’t say I know all about it, but my family do suffer from various autoimmune diseases on both sides. (Not Hashimotos though). In my head my symptoms are down to an autoimmune system attacking my thyroid (hashimotos.) the docotors at the surgery really seem to think my symptoms are caused by CFS. So i discovered the gluten link, and about how gluten damaged your gut, but really that’s about it as far as it goes. I m convinced when I feel fluey that is because my immune system is on the attack, excaberated by gluten. It’s not the kind of surgery where you can have a chat about your options or theories! One GP said she knew nothing about it. The old dinosaur said it was his specialism, but absolutely pooh poohed conversion problems. I did go to Endo who mentioned perhaps a conversion problem and so didn’t mind a suppressed TSH as long as my FreeT4 didnt go over 27 (which it does a lot), but I am back in the hands of the GP now. I just don’t see him unless I have to. I take it there is no rhyme or reason to ‘swings’? And how do I find a good Endo who I can talk to. I know T3 is not perceived, but if I could get hold of some for a trial? ...

[Gilbo72 in reply to Gilbo72]

Predictive text... prescribed not perceived!

[greygoose in reply to Gilbo72]

Of course they want to diagnose you with CFS! It's so much easier for them. They can then forget and ignore you with an easy conscience because there's no cure or treatment for CFS. Just diagnose and job done! It's really quite immoral.

You're right that Hashi's is all about the immune system attacking the thyroid and slowly destroying it. But I really don't think you would feel 'fluey' during an attack. As the dying cells deposit their stock of hormone into the blood, raising levels of FT4 and FT3, it's perfectly possible that you would feel better, rather than worse. I really don't know about the gluten.

Some specialist that dinosaur, if he doesn't know about conversion problems! But I suppose it's easy to proclaim yourself a specialist when nobody around you knows the first thing about it. In the land of the blind, and all that.

I did go to Endo who mentioned perhaps a conversion problem and so didn’t mind a suppressed TSH as long as my FreeT4 didnt go over 27

How strange! If you have a conversion problem, what difference does it make if your FT4 goes over 27. It's the FT3 that is important, and if you can't convert the T4 whatever its level, the only thing to do is add some T3 to the levo.

There are no rhyme or reason to the swings - as far as anyone knows. But, it might help a little if you could keep your TSH suppressed.

I don't know how you find a good endo - does such a thing even exist? But, you could get hold of your own T3 if you wanted to. Just write a new post asking exactly that, and people will PM you their trusted sources.

[Gilbo72]

So is the general consensus then that I do probably have a conversion problem, and perhaps a trial of T3 added to a reduced Levo might be the way to go??

How long should I trial for?

Thanks for all your help guys it is much appreciated. I will get a private test done shortly before I embark on this adventure. And post the results.

[SlowDragon Administrator in reply to Gilbo72]

Thyroid Uk has list of recommended thyroid specialists, quite a few prescribe T3

Email Dionne for list

[e-mail]

It is possible (but difficult) to get T3 on NHS due to cost

With Hashimoto's dairy can be a problem too as well as gluten

thyroidpharmacist.com/artic...

Like many with Hashimoto's, your gut is affected and you are gluten intolerant, this indicates poor gut function, which will reduce conversion of FT4 to FT3

Liothyronine links

british-thyroid-association...

theyworkforyou.com/search/?...

[Gilbo72 in reply to SlowDragon]

Thanks SlowDragon. Great stuff! Useful articles. I have heard that a box of T3 here costs £350, while abroad you can pick it up for €2 over the counter. It is disgraceful!! I have managed to get myself a couple of boxes the latter way, (not sure if this will be enough for a trial?), but I will get a private test done first and see if I can find some medical person who is happy to monitor me (and maybe, she says being very optimistic) have an influence on how the GP views my case...

[SlowDragon Administrator in reply to Gilbo72]

Meant to add, it's also worth considering the DIO2 gene variation test.

If you test positive, you have impaired ability to function on just Levothyroxine and need small addition of T3 (heterozygous- inherited from one parent or homozygous- inherited from both parents)

Slowly this is being more recognised, and has helped some of us obtain NHS prescription for T3

Lord O'Shaughnessy mentions DNA testing in the Lords debate

Not a cheap test. But worth considering

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

T3 20mcg currently costs NHS £258 per box of 28 tablets, that equals £920 per 100 tablets

In Germany 100 x 20mcg T3 is just 31 Euro

bbc.co.uk/news/business-420...

[Phoenix369]

Hi Gilbo, Reading your post with interest.

I’m new to the forum, having had hypo symptoms all my adult life and partial thyroidectomy years ago ( huge goitre) I have had zero engagement from any GP so am finally booked for private blood tests next week.

The point that interested me most was your “flu-like” symptoms. I’ve never spoken to anyone else who gets this but I think I know what you mean. Often when I over-exert myself, my body sort of goes into shut down, feel cold and shivery, sore throat, super tired and achy etc.

I tried a gym membership in an attempt to lose weight but have given up for now, it’s just too hard

Hope you manage to get your meds sorted, good luck.

[Gilbo72 in reply to Phoenix369]

Hi Phoenix, I’m so sorry you suffer from the dreaded flu like symptoms. They are absolutely horrible and can bring you right down, and scupper any plan of getting healthy. I remember trying the gym membership too!

Going through my blood tests to make the table above I was angry to see on my ‘clinical notes’ on each blood test the reason for the test was for ‘tiredness’. It makes my blood boil. I never ever said that, I always said it was because of ‘flu-like’ aches.

For me it makes perfect sense, if you have an autoimmune disease you could well feel unwell when your body is under attack. You feel unwell if your body is under attack from an outside source, so why not from an inside source. And this explains the no rhyme or reason to it. In fact I used to get the same flu like ache for everything. I can’t remember the last time I had a proper illness like the rest of my family. I just get my flu ache and symptoms you describe that doesn’t really mount to anything. I used to get it when ever I over exerted too. I don’t believe in ME/CFS, as it is a non diagnosis. You can’t test for it. What I do believe is if you have an autoimmune disease your immune system is a bit dodgy and can react differently. And I think the thyroid and gluten combo played a huge part for me in the flu aches. I could go on and on... needless to say. When my TSH is suppressed and I’m a 100% gluten free, my flu aches are minimal. (or due to catching a lurgy). Good luck, don’t give up you will get there!) xx

[Helenca]

Please read The Paleo Thyroid Solution by Elle Russ, available on Amazon. I have been on every thyroid regimen imaginable for the past 35 years since my thyroid was ablated after Graves disease. The thing that has become most obvious is that DIET has more to do with how my thyroid levels behave than anything else. I have both Graves and Hashi antibodies, but they both respond the same way, and cause your numbers to swing wildly if you are eating gluten, and especially if you’re on a high carb diet. It is possible to take your antibodies down to almost zero by eating minimal carbs, eliminating gluten and probably dairy too. It seems harsh, but it is doable, and the improvement in how you feel is well worth it. Your T3 results, where available, are way too low. You seem to have the classic conversion problem that results from Hashimoto, which can swing back and forth between hypo and hyper symptoms. The only way to normalize is to cut carbs radically, like no more than 50-100 grams per day, with zero gluten, and only then can you find your optimal dose of thyroid meds, most likely natural dessicated thyroid or combination T4 and T3. I am now on T3 ONLY, but I am a special case because I have no thyroid.

[Gilbo72 in reply to Helenca]

Thanks Helenca, interesting stuff. I have wondered about dairy but haven’t quite managed that. I do like halloumi... and a bit of yoghurt... and tea with milk, and cream and ... but I will read the book with interest.

I always get confused with ‘low carbs.’ I get potatoes, rice, pasta is bad carbs, but what about the good stuff, sweet potatoes, green veg, fruit and veg, beans, quinoa etc? Do I cut right back on that?! X

[Angel_of_the_North]

Well, there's something not right there. High TSH (thyroid stimulating hormone) and very high free T4 (free thyroxine) - no free t3 result. It may be that your TSH is slow to react to your thyroid hormones levels and you have just had a Hashis flare. If you are not taking a supplement that contains biotin (unreliable result), you need a referral to an endo with a clue. I think you need to buy him a hat (no one has hats these days) and a nice jar of mustard.