I have subclinical hyporthyroidism, and I have TFT done on a yearly basis. My TSH is normally around 6.8 to 7.7. My T4 has been gradually dropping and the latest result was 10.2. Since Late december i have suffered from severed delayed pressure urticaria and angeodema. I saw an immunologist in April who has prescribed me 720mg per day of fexofenadine which is making my symptoms bearable (before i was covered in hives and swellin up and burning up to the point that i couldn't function). My immunologist identified that I have a severe vit D deficency and a slightly low adjusted calcium level. Followed this up with my gp who repeated the tests. ON repeat my vit D was slightly better but still low at 58 NMOL (was 20) and calcium was just within normal. My parathyroid was show top end of normal at 7.6. I am awaiting the results of the autoimmune disorder test from the immunologist. I also had gallstones in 2010 which resulted in the removal of my gallbladder and I have a mother and brother with hyprothyroid. Is this all linked? SHould i pressure the GP into treating the sub hypo or refer me to an endocrologist? I am due to go back to the immunologist in July. thanks
Urticaria, angeodema and subclinical hypothyroi... - Thyroid UK
What was the range for your TSH ? You should have the FT3 tested and the Anti-bodies - Anti-TPO and Anti-Tg. Even without the FT4 range it looks ominously low to me which means the FT3 will also be low. No wonder you have so many symptoms.
What auto-immune conditions are they testing for ?
Have you emphasised your family tree of hypo conditions ? Gall Bladder problems too are linked to low thyroid output. Could you afford to have your tests done privately through Thyroid UK ?
Test kits can be sent to your home ....
Look at the 3rd column of the above link. Also inform your GP that Thyroid UK is an acknowledged site for the NHS website. Sorry do not have a link - perhaps someone else will come along with it !
Do hope you soon receive the treatment you deserve.
How are you treating the Low VitD ? Also take VitK2 to direct calcium to your bones rather than leave it circulating in your arteries if you are taking large doses of D3.
You are not subclinical with a TSH that high. You are honest to goodness hypo once your TSH hits 3. But the NHS is a band of sadists who want you to suffer until your TSH hits ten, when, miraculously, you will suddenly become hypo in their eyes!
You must continue to nag and nag and nag your stupid doctor until he gives you some Levo. Is he hoping that is will suddenly get better by itself? Well, it won't, and you need treatment now!
I don't know if it is all linked, but I expect it is. Being low in T3 can do such terrible things to your body. And hypo does run in families.
I hope they are at least treating your vit D deficiency. And I hope they aren't giving you calcium supplements. If you take vit D3, it will increase absorption of calcium from food, so that will bring your level up without swallowing rocks. But, as Marz said, do take some vit K2 with it to make sure the calcium goes into your bones and teeth, not your tissues.
You should also get your B12, folate and ferritin tested.
Thanks everyone. I think at the moment my vit d has risen a little as the weather has been nice and i have made a concious point of going out in it and eating fortified cereal and spread. I am wondering if a over the counter vitamin would help. The gp is insisting on a repeat blood test i think he expected the parathyroid to be high and it wasn't. The gp told me it was subclinical as the t4 had not yet dropped off. My immunologist has done a autoimmunine seriology and i am just waiting on the letter with the results at leat now i know what to look for when it arrives. Hopefully it will give a bigger picture. My gp seems to finally be listening a little as he has now done full blood scores. Liver is all fine but kidneys are showing a low gfr of 60. But again thats borderline which is typical for me lol!! Thanks for the tips on the other tests i feel like i have a few more things to take to my gp now. I went private to see the immunologist but i had to convince the gp to refer me but hopefully i can do the same for the endocrologist (sorry for the bad spelling) thanks everyone now i feel less like its all in my head
Well, you didn't tell us what the FT4 was. So, is he waiting until you've got no more T4 before he treats? In any case, your TSH is not high for nothing. It more than likely means that your FT3 is rather low. And that's the important number, not so much the FT4.
Eating 'fortified cereal and spread' does not sound like a good idea, to me. Cereal in itself is bad for many reasons, and 'spread' sounds like you're talking about margarine, which is a terrible thing to eat! Besides, the vit D they use to 'fortify' is D2, which is not the most easily absorbed, but it is the cheapest.
By 'an OTC vitamin', do you mean vit D3? Yes, it probably would. In fact, I think it's really necessary. Has your doctor not given you anything for it? If he has, he's probably given you a tiny little dose that would help a gnat! Because that's what they do! Do you know how many hours you would have to spend in the sun to raise your levels? An awful lot! You really do need to supplement, as Marz and I said above.
You need your thyroid antibodies tested, both TPO and TG (NHS rarely does TPO-Ab and almost never does TG Ab )
If one or both of these are above normal range then thyroid issue would be diagnosed as being auto-immune Hashimotos'.
A very high percentage of Hashimoto's patients can also have significant gluten issues (or undiagnosed coeliacs) causing poor absorption of vitamin D, calcium, magnesium, selenium and zinc
According to the expert website on parathyroid issues long standing vitamin d deficiency (as seen in undiagnosed coeliacs) can be a cause of secondary Hyperparathyroidism
This website (and especially the app) clearly explain differences between primary, secondary and tertiary Hyperparathyroidism
Parathyroid app available for mobile or iPad or tablet to help with diagnosis too - costs about £3.50
Just put in your vitamin D, calcium and PTH blood test results and it helps work out possible causes.
If GP won't agree to full testing you can get this done privately via
Thyroid plus eleven test from Blue Horizon £99
I am not a medic, just a Hashimoto's sufferer, whose gluten intolerance was missed by medics for decades, leading to poor absorption causing low Vit D, magnesium etc (and parathyroid issues).
Sounds as though your GP is a sadist. Yes, you need to get that hypo treated, you are getting worse and no one is tackling the cause. All your symptoms have been associated with hypo.
Have just had my thyroid function tests repeated and now my TSH is 11 with a T4 of 12.7. The gp has agree to test my antibodies and i am just waiting on the results.
Finally got my gp to do thyroid peroxifose an conc and i got a reading of 536 ui/ml according to the result ref range should be under 50. Does this mean i have hasimotos? Due to see my immunologist and gp later today for reviews.
Yes you have Hashimotos. So how is your useless GP treating you ? Please read my post to you at the beginning of this thread and make some notes before you see the GP. We have to work hard to help ourselves. Please point out to your GP that this forum in on NHS Choices website - as linked for you from radd - above.
Also before your GP goes on about treatment and heart issues - please take a look at the book on Amazon - called - Thyroid and Heart Failure. Having a LOW thyroid has over 300 consequences in the body - it affects every cell of your body - including the cells of your heart - not forgetting your brain
Thanks marz i am glad i managed to convince them to do that test. I will have read of those links before i see my gp at 4:30. I am seeing the immunologist at 11 so i will also ask him opinion i know its not strictly his area but he is treating my urticaria. Wish me luck!
Vitamin D, B12, folate and ferratin all need to be at GOOD (not just average) levels for the thyroxine to work. This is not something even most endocrinologists seem to grasp.
If GP won't do these tests - then like many of us here you need to resort to private tests -
Blue Horizon Thyroid plus eleven test will check all these, plus antibodies.Easy to do at home, finger-prick test, post back. Results emailed to you couple days later
Not all hashimoto's patients are coeliac, though some are, but far more are gluten intolerant due to leaky gut issues.
Ask GP to do coeliac blood test before going gluten free.
Gluten crosses from gut into blood stream and causes raised thyroid antibodies
Adopting 100% gluten free diet should help increase nutrient absorption, reduce antibodies, also selenium supplements may help lower antibodies.
Vitamin D3 - Solgar soft-gel oil capsules are good. As others on here have said, you also need to take vit K 2 if taking Vit D - this helps the calcium go into bones. Magnesium also strongly recommended.
Liver function - high bilirubin and low GFR apparently also associated with being hypo.
My gp has now decided that to try 25mcg of levothyroxine test in 6 weeks to see if its bringing down my tsh and if so carry on and monitor as normal for hypothyroidism. He agreed my antibodies are so high that it is an inevitability rather than a possibility and best to step in now. I am already on vit d and b12 supplements as I was tested as deficient earlier in the year and they will retest that in sept. Finally feel like thgery are listening to me I was tested with a high bilrubin earlier in the year but they told me that was due to having no gallbladder :-s
Day 8 of levo and the ongoing 4 x fexofenadine and 1 x montelukast i am pretty much hive free!! My tiredness and brain fog seems to be easing a bit (i know this take time) but so far so good. I have had some trouble with diarheoa but nothing that im not used to as having no gallbladder seems to have that effect which my immunologist did say was related to that more than anything else. However i will ask about going gluten free when i next see the gp in a couple of weeks . I will keep you posted on my follow up and tft bloods end of aug with the gp
I have now had my 6 week of 25mcg Levi blood test. My tsh is 8.2 and FT4 is 14.8. I was feeling great but the tiredness has started to creep back especially first thing in the morning. Which I have read is the peak time for tsh so that does kind of make sense. I am still self medicating D3 with 1000 ui per day as my gp said at 68 it was not low enough to qualify for NHS treatment however he has agreed to keep an eye on it and I am due a retest in sept. When I see my gp on Thursday should I expect him to increase the Levi or is it not enough time to know if 25mcg is right for me. Thankfully my IBS seems to have settled again and my hives continue to be under control with the fexofenadine and montelukast. Any advice for my gp app welcome.
Oh dear goodness - change your GP! Your TSH should be around 1.
Like you I have Hashis and I had ongoing issues with hives, angioedema and like you saw an immunologist (My Tryptase levels are raised to 24 when NOT having a complete reaction - goodness knows what they are like when having an episode of bad angioedema). These issues indicate a Mast Cell Disorder. The immunologist I saw said that I must keep my TSH below 1 given this other issue. Like you I was on Fexofenodine (plus an H2 inhibitor for acid reflux and to help with the hives) - but remained unwell.
Now I got completely fed up of feeling rubbish, did a load of research and have switched to gluten free and self sourced Natural Desicated Thyroid. For me this has made a huge difference - I'm no longer on the Fexofenodine or H2 medication and no longer chronically itchy. My immunologist was very suprised, but pleased. My GP continues to monitor my bloods (just TSH usually - not good!), but continues to do so just once a year. I order my own tests (through Blue Horizon) and monitor my thyroid health myself and share this info to my GP.
I take supplements as my B12 was low on private tests and folate inexplicably high. I also take selenium (200mg) - which is meant to help with converting the thyroid hormone T4 to the active T3. I do take vitamin D, particularly in winter.
I am clearly more well - though still have bad days. Due bloods soon.
Hi thanks for the reply sounds like you have had a similar ride as I am having. Out of interest have you ever had gallbladder issues? I had mine removed in 2010 due to stones which caused me no end of trauma and was taking omeprezole with little relief. Since then I have been much better apart from bounts of IBS. Until the hives started just before Xmas last year and the no end of trauma I have had since. When this all started I said to the gp I'm sure my thyroid is involved which fell on deaf ears and I was fobbed on many times. My mum and brother are hypo so I was not going to let it go! I am seeing my gp tomorrow morning so I will see what he says but I am hoping this shows my dose needs stepping up. I have been reading a lot and have seen some really interesting research regarding following a celiac diet with hashi and I am considering making a commitment to that when I get back from my holiday. I have to say I am a millions miles from where I was early in the year but I know the battle is not over! 😀
Hi - I've no history of gall bladder problems, but I do have IBS. If you cannot get your GP to order a full thyroid panel (maybe suggest it would surely be cheaper than more referrals to specailists such as immunology and endocrinology!). What really matters is your free T3 level - and this cannot be found using a TSH test!
Have a good holiday. The gluten free diet is fine when you get used to it (and the IBS for me is way better off the gluten).
So i had my three month review with my immunologist and i thought it was going well. Informed him i am now on levo and he seemed impressed by my gp. He also agrees i should now trying stepping down the antihitamines. Then he throws me a curve ball. He informs me one of my white blood count, lymphocytes were low at 11%. He said he didn't initially follow it up due to the untreated thyroid. So loads more blood tests which i am awaiting the results on. But i am freaking out a bit when i google it i get lots of scary stuff come up. Any ideas what he is looking for???
Sooo the saga carries on. Tried to step down the antihitamines. After a week of feeling like utter crap i am back on my previous dose.. had my thyroid review tests after the increase to 50 mcg from 25 mcg 6 weeks ago and my tsh has gone up slightly and my ft4 has dropped a little dispite the increased dose.
Tsh - 8.5
Ft4 - 13.8
Vit D - 90 this is up from 58
Adjusted calcium is lower than ever at 1.99 this is along with the other calcium reading as low. Not on calcium supp as the gp advised the vit D should correct it.
Still awaiting hospital results on the lymphocytes.
Seeing the gp thursday if my thyroid tests are still roughly the same on the increased dose does this mean my hypo is still progressing should i be expecting a increase in levo?
Feels like a game of catch my tail!!
You really need to start new threads as your responses are not visible as they go back 5 months and I am sure many have been missed. Saw your new post today - but not everyone will go back and read all the above
Yes you need to increase dose. We step up in 25mcg steps until TSH drops to around 1 and STAYS around one, even as you start to feel better and get more active. FT4 should be at top of range and FT3 at least in mid-range
As your vitamin D has increased you are more able to use the Levo.
I think you said you were on B12. Are you also taking vitamin B complex (helps keep B's in balance)
How's the gluten free diet? It does have to be very strict, no cheating. I have found it a fantastic improvement.
Are you taking selenium supplements? Can really help improve conversion and reduce antibodies too