Help...not sure what to do next!

My last blood test results 2 months ago were:

TFT (FT3)

TSH *0.33 mU/L 0.4-4

free T4 17.8 pmol/L 9.25

free T3 3.7 pmol/L 2.8 - 7.5

Thyroid AB screen 1170.0 IU/ml 0.01-34

My GP thought it was "fine" and told me to go back in 6 months. I feel far from fine-much worse on medication than without. My weight is horrendous and I can't seem to lose it despite walking miles every day and having a good diet, my mood swings/depression are really causing problems in my marriage, I am tired all the time yet can't sleep, have aching joints, crap hair and skin and zero libido.

My GP "Doesn't think" I have Hashimotos

" Isn't sure" if she can prescribe T3 and thinks I am

" slightly over-medicated"....and this is the best GP I have seen to date!

I am on 100 mcg levo but really question if its working properly. If my GP thinks I'm over medicated I have no chance of an increase so am wondering if I should push for T3? I know lots of you take T3 but it seems so complicated having to split doses etc-plus I have to admit I am worried about making myself worse than I already am :-(

I treat myself as if I have Hashis and really would like it to be confirmed but don't want to sound like a hypochondriac. Is there any benefit in knowing?

Also, I take my levo approx 4am so Im not sure what to do as regards missing a dose before a blood test?

Sorry to ramble on but I am really at the end of my tether and don't know which way to turn. Thanks for listening!

28 Replies

oldestnewest
  • Your elevated antibodies mean you have autoimmune thyroiditis (Hashimoto's). Treatment is the same as non-autoimmune hypothyroidism but will be more difficult to stabilise as you may become over medicated when the thyroid sputters back in life periodically and then under medicated when it can't be arsed and stops producing its own FT4. Having one autoimmune disease also predisposes you to others unfortunately so I think it is better to know.

    Optimally, FT4 and FT3 would be in the top 75% of range. Yours, plus your ongoing symptoms, suggest that you are either under medicated on your current dose &/or not converting FT4 to FT3 properly. If you've felt unwell despite increasing your Levothyroxine it is time to ask your GP to prescribe 20mcg T3 in combination with T4, probably reduced to 75mcg initially else your TSH will become very suppressed.

    Your GP is able to prescribe Liothyronine (T3) which is licensed for use in the UK unless her practice doesn't allow it, usually on grounds of cost. If that is the case, you can request referral to an endocrinologist who might instruct the practice to prescribe it or you can buy it online for under £14 inc p&p and give the practice a row when you feel better. Taking T3 suppresses TSH and FT4. Your GP will need to know that.

    You don't need to get into complicated split dose regimes. It is certainly sensible to split 20mcg into halves and take twice daily for a few days to make sure you aren't overly sensitive and if you don't have any adverse effects take 20mcg x 1 daily. If you get racing heart and palpitations the effect should wear off after 6 hours and you can skip/reduce the next dose. I take 100mcg T4 plus 40mcg T3 in one morning dose.

    Don't take your 4am dose until after your blood test. You have plenty of Levo in your system and won't experience 'withdrawal' symptoms. If you have your blood draw as early as possible in the morning your TSH will be at its highest level if you're concerned your GP might want to reduce your dose.

    You should request the following blood tests: ferritin, vitaminD, B12 and folate. They are often deficient or low in range in hypothyroid patients and getting them high in range by supplementing can make an enormous difference to well being and aids absorption of thyroid meds.

    Lastly, ask for a coeliac screen, another villain in the hypoT torture chamber. If positive you'll need to adopt a gluten free diet. Don't change diet until after the test. Many hypoT and Hashi's px adopt gluten-free, dairy-free and sugar free diets and find it helps. Probably best not to try all three at once though. :)

  • Best description i have read about hashi :) now i understand what it is thanks

  • It's simplistic but basically explains it. Eventually the attacks from lympohcytes will destroy the thyroid gland. Taking thyroxine means the pituitary doesn't feel the need to push out TSH to order the thyroid to produce FT4 and takes the heat off the thyroid gland, prolonging its life.

  • I am hypo and felt very unwell 6 months ago, blood tests showed very raised TPO antibodies. Neither GP nor endo had any suggestions for how to deal with it!! After reading about auto immune disease (which includes Hashi's) I put myself on a gluten and dairy free diet and my antibodies have come down to very low levels. I dare say the medics would say it was coincidence! I know I feel better than I did by quite a bit.

    Conventional medicine doesn't know how to treat Hashi's and so they won't say that is what you have! You get a diagnosis there should be a treatment regime!!!

    I have now read several books on Hashi's/ autoimmune disease including The paleo diet by Robb Wolf and the Wahl's protocol by Terry Wahls. I found them very helpful. Going Gluten free is never easy but is a lot easier than when I was told I was intolerant to wheat 15 years ago. It is much easier to find gluten free foods now, but you will have to make most meals from scratch, there is a lot of hidden gluten in processed foods. I am also dairy free but have found lactofree milk is good, you can also get lactofree cream, yoghurts and cheese.

    You wouldn't put diesel in a petrol car so why eat what is bad for your body! Hope things improve.

  • Thanks so much both of you :-)

    When I was first found to have high antibodies (1600+) I read up on it and although Hashis had not been confirmed I went gluten free and as you can see they have reduced a bit. I have had a full blood test incl coeliac, vit d, ferritin etc and they were all in range-in fact my iron (ferritin?) was too high but that appears to be normal now too. I probably would do better being dairy free too but I feel my diet is limited enough as it is. I just seem to be eating the same old stuff day after day.I certainly feel the effects of being gluten free and would never go back, as my digestion is so much better these days...I just wish everything else would fall into place too! My GP said when she gave me those results above that she's surprised my Thyroid isn't functioning worse than it is but then went on to say I may be slightly over-medicated. Is it just me of does that sound crazy?

    One last question-I have read before about TSH being supressed but am not sure what this means??

  • As a general rule of thumb (the one doctors seem to use), TSH rises when an untreated patient is hypothyroid i.e. not producing enough thyroid hormones, and TSH reduces when an untreated patient is hyperthyroid i.e. the patient is producing too much thyroid hormones.

    If a hypothyroid patient is on high levels of medication it might reduce their TSH to very low levels indeed. Please note that taking T3 almost always reduces TSH to very low levels.

    When doctors see very low (suppressed) levels of TSH in a hypothyroid patient, they jump to the conclusion that the patient is now hyperthyroid, is over-medicated, and is going to give themselves osteoporosis and a heart attack. Therefore the patient must have their medication reduced. The fact that the patient may have no symptoms of hyperthyroidism is totally ignored.

    This belief from doctors that a very low TSH in a treated hypothyroid patient is always "equivalent" to being hyperthyroid causes no end of misery for thyroid patients. I would guess it is one of the main reasons for people starting to self-treat. The other main reason for self-treating, of course, is the difficulty of getting diagnosed and treated in the first place.

  • Right...it's a bit clearer now! So all the scare mongering about having heart problems with T3 is just that then? I ask because there is a history of heart disease in my family (dad died at age 58, mum with angina, other family members died of heart disease) BUT they all smoked so hopefully that's the only connection. I can well understand why people self-treat but am hoping my GP will come up with the goods so I don't have to!

  • I wouldn't go that far. Too much T3 probably would cause heart problems if the patient kept it up for a prolonged period of time, so it isn't all scare-mongering. But doctors usually decide what is too much medication on the basis of how much TSH the pituitary is producing. They often don't actually measure how much T3 the patient has, and many of them don't care how the patient is actually feeling. The TSH is all that counts.

    As someone who took high doses of T3 for a while to lower very high reverse T3, I know that high doses will make people feel quite unwell after a fairly short time (6 - 8 weeks in my case). I don't believe that anybody would willingly take too much T3 for very long.

  • I give your GP some credit for suspecting that you are overmedicated on the basis of your low TSH but not leaping in to decrease your dose because of your ongoing symptoms.

    Your TSH of 0.33 is below the reference range of 0.4-4.00 which means it is suppressed. Humanbean's post explains.

    I had ThyCa and ideally my endo would like my TSH to be suppressed or lower <0.1 to avoid recurrence. It has been undetectable in the past, then 0.001 but I felt very ill, although I wouldn't describe the symptoms as hyper despite the tremors, palpitations and racing heart. I basically felt poisoned. I felt considerably better when TSH rose to 0.003. However, Levothyroxine monotherapy made me ill and I wasn't converting FT3. The addition of T3 has made an enormous difference and I'm now recovering.

    Although you say your vitamins were in range hypo & Hashi px really need their vits to be high in range to feel well.

    My ferritin was over range which can apparently be a sign of inflammation or infection which my low neutrophils also indicated. GP didn't follow up and nor did I. In hindsight I'm assuming that the Levo problems were likely responsible.

    Sorting out my vitD & folate deficiencies and low in range B12 improved my well being hugely but I think the addition of T3 has been the most beneficial.

    ps there's a pinned link Gluten-free chat. Some of the recipes are mouthwatering. I'm not g-f but I'll be trying some out when I feel like cooking again.

  • Supposing there is a miracle and my GP does prescribe T3 I am going to tread ultra, ultra carefully because although I have lots of horrible symptoms I don't feel "ill" as such and if I had tremors etc as you did I would worry myself to death!

    I am at present taking a huge dose of Vit D3 (10,000 I think?) in an effort to improve my moods. I have tried B12 but I got acne (never had it before even as a teenager) and still bear the marks a year later so have shelved that for the time being. My high ferritin was prior to being diagnosed and like you the doc didn't seem particularly interested. I swotted up on it and found the only way was to give blood but then next time my blood was taken my levels were "normal"??!

    From day 1 of this delightful journey I have always felt that I needed T3...dunno why, so it will be interesting to see if I am right!

    I must have a look at the gluten free chat. Someone has recently told me of a fish and chip shop not too far away that has a gluten free day once a month so boy am I looking forward to that!

  • You will start feeling ill if you don't control the symptoms and address the reasons for them.

    Getting acne when supplementing B12 is a sign that your deficiency is being addressed. It wouldn't last for ever. May be worth another try with a different brand in case the fillers in the supplement were aggravating the acne.

    There really is no need to be frightened of T3. It's approximately 3 times the strength of T4 which is why your Eltroxin will probably be reduced and if you feel over medicated the feeling will pass within hours as the T3 exits your system.

    It's the pudddings in g-f which excite my attention :-D I used to enjoy a pizza called King Edward. The base was made of crushed KE spuds. It was scrummy!

  • Sorry to butt in, but that's really interesting about the acne showing your deficiency is being addressed, I've just had a breakout. That makes me feel much better :-)

  • Do let me know if it turns out to be a temporary thing will you? Big zits are not a good look!

  • It's currently doused in lavender oil so hoping for the best! ;-)

  • Fingers crossed!

  • Try water only Harry.

  • Sure it's not an allergic reaction to your workplace? ;)

    b12d.org/b12-injections-wha...

  • Quite possibly! ;-)

  • Very interesting about B12. I would have to seriously think about it though because as I say I still have spots/marks from over a year ago that I can't seem to get rid of :-(

    You have convinced me about T3...I just need to convince my doc now!

    Slimming World do a pizza with a base made from Smash. I have to admit to having tried it and it was OK so I can only dream about the King Edward one!

  • Let me see...angry red zits or not having these horrible mood swings. It's a tough call :-(

  • Just to check Infomaniac when you had your gluten intolerance test were you eating gluten 3 times a day for 2 weeks before the test? On celiac Ireland this is what is recommended to check for wheat/gluten intolerance. I didnt have the test but gave up gluten anyway and feel miles better for it. I also have Hashis. Sometimes I cave and eat wheat and it is always a big mistake. I get gas, constipation and pains in my abdomen so I know Ive done the right thing as you know you have.

    A suppressed TSH is when your results are below the range of TSH. Mine is currently <0.05 and has been for a while and I feel so much better. Though your doc will be TSH TSH TSH it is not the right test or only test.

    scottish.parliament.uk/parl...

    look at the above as Dr Toft now says it is not the right test and you can go to your GP with this. Also in Tofts "understanding thyroid disorders" he suggests that some patients may feel better on T4/T3 combinations and feel better with suppressed TSH. It's a fight, I know, but I got onto Armour and have not looked back. I have just done a course of study and am applying for jobs a huge difference to 2 years ago. On levo I was very ill worse than before the diagnosis. This is usually because the person is under medicated. I had to take 125 of levo to feel anywhere near normal, but still it wasnt right and thats when i changed to Armour. Ask your doc for a trial, be scientific and unemotional about your reasoning for the trial. Not all drugs work the same for everybody as many docs have said to me, it depends on the person. Also Docs in the UK can use medication they think is appropriate and dose by symptoms this was in an article called straight from the horses mouth (sorry you will have to ask admin about that article though). In regards to tired and not sleeping I was the same on levo and didnt lose weight either. Take valerian for sleeping it works a treat for me. Go to any health food shop and ask and you can get it in many different forms too. It's helped me loads the past few weeks through exams. Take care of yourself x

  • When the GP suggested the gluten intolerance test I told her I'd been gluten free by then for over a year so obviously hadn't had any...but she said it didn't matter for that particular test. I thought it was odd at the time as it went against everything I'd heard but I didn't really challenge her on it. She's quite nice and helpful and I hate trying to tell her her job! My digestion is a million times better since going GF. I have been constipated all my life but am practically regular these days!

    The Scottish Parliament link is brilliant - thanks very much. I might send it to the GP so she can digest it fully before I make an appearance...it can only help and at least I'll not feel like it's me telling her her job but other doctors! I smiled when you mentioned being "scientific and unemotional" as I feel I am on the point of crying about 90% of the time! I will definitely give Valerian a go. I normally use Magnesium Oil but sometimes it just doesn't work. I think I had about an 1 1/2 hours sleep last night :-(

    Thanks so much for your help x

  • Oh that's horrible. I get very bad when i cant sleep I cant imagine 1.5 hours. Get the strong stuff! I only glimpsed at some of the replies above and saw you were worried about your heart. My heart would race and palpitate when i was on levo. It frightened me. When I started Armour my pulse was high and blood pressure high too but I think from poor medication on levo. As time went on I got better and better. Your body has to adjust for sure but my BP and heart rate are down (the doctor wanted me on statins but i refused and carried on with Armour) I also bought a BP unit as I suspected white coat syndrome and at home BP was much better! I know you are concerned about changing but soon you will know more than your Doc and how your body works with the meds. promise! xx

  • The way I explain to my GP/s -it would seem as an annual rite, after they have done their annual blood tests is this:-

    The TSH blood test does not test for the level of thyroid hormones in my body. This is because the TSH is just a chemical signal from my brain to my thyroid telling it to produce the thyroid hormones. Unfortunately for me it is unlikely that my thyroid actually has the capacity to produce much if any thyroid hormones these days. What is more important is the level of thyroid hormones in my body. In my case the Ft3 is pointless because my medication (Erfa a natural desiccated thyroid) has T3 & T4 (amongst other thyroid hormones ) already in it -Any medication with Ft3 in it will cause highly erratic Ft3 results and will suppress the TSH.. Therefore lets just stick to the FT4 result and how I am feeling -I need to be towards the top of the range -am I? Doc says yes you are in range and in top third of it. Great says i -I am in range and towards top so that is fine isn't it? I am not over medicated. I am feeling well. They can but agree with me.

    The truth is GPs in general are rather ignorant of the condition -especially Hashi's so you will need to become genned up and the 'patient' expert ( this is supposed to be encouraged in patients with long term chronic conditions so NICE etc tell us - we the patients are really less sure that GP's like us in this role) -there in lies your power really. I really do not understand why GP's are not more knowledgeable of this condition as it is very common and must occur extremely regularly in their clinics. In their initial training I believe they are given something like 2-4hours training in the area of thyroid conditions in the whole of their 5 years training....upshot not a lot of training..... And secondly these days they are trained up in what is called 'evidence medicine' This simply means that they rely on blood tests and scans as their main interpretation of how to treat us. They are supposed according to NICE guidelines take into account are signs and symptoms alongside this but many don't.....but some do....if you can find them!

    The reason why my GP's go into melt down over my TSH is that it has now been consistently for as many years as I can remember since having optimum treatment -0.02. I have no hyperthyroid symptoms....Infact my memory has never quite recovered from it's hypothyroid infliction sadly....ah well....I continue to live in hope -he he :) :)

    Lastly you might find it helpful to read Paul Robinson's book called 'Living with T3' which is also about his recovery from being diagnosed with Hashi's. A very useful resource book.

    And of course this site has lots of support and people who will help you :)

    Stay strong......

  • Thanks Waveylines that's very helpful. It sounds so easy when you say it! I'm going to re-read this before I go to see the doc and just lay it on the line, in a nice way, that I want T3, why I need it and that I will scream and scream till I'm sick if I don't get it!

    I've seen stuff about Paul Robinson's book on Facebook but it seems to depend on Circadian rythms, which though it seems to make a lot of sense, would I think take a whole lot of effort :-(

    I am following Isabella Wentz and thinking of buying her book. I read something that she'd written today saying that autoimmune conditions are like a 3 legged stool which depends on genes, triggers and intestinal permiability and if one of the legs is taken away the condition can no longer exist, which sounds very encouraging :-)

  • no problem -not sure the screaming will work but you will feel better :) :) :) he he

    If you go down the T3 only route for your medication the blood tests are all pointless - that was Paul says!!

    I use the circadian method but only to address my adrenals -if you don't have any symptoms of that you don't need to . His book only has a very small part on this method -the rest is about his story, using T3 and vits/minerals that help.

    haven't heard of Isabella Wentz.....interesting. Will have to look her up thanks :)

  • hi, you need to be referred to a consultant, the gp can't simply say that the results look ok they need to cure you!!! 30 minutes after starting lyothyronine my life changed, go for it!

You may also like...