Shocked at lastest results

Hi everyone,

Went to see endo last week and he rang me today, i am so shocked with results which are tsh 10.8 and t4 11. Iv got hypo blood results and hyper symptoms in large. He told my problem problem stems from having crohns disease. I cant understand what has happened for the change in results to be so huge. He told me to continue on 100 of levo and he would see me in September. Iv not not print out out of other bloods taken yet and I cant see how just taking the same strength of levo will make any difference if the problems is with my gut. I am unable to tolerate anything highter than 100 and even on this i can feel toxic at times.

Any ideas please



30 Replies

  • Yorks, Crohns affects absorption of Levothyroxine. Dose should be increased to accommodate malabsorption but I don't know what you can do if you are unable to tolerate a higher dose.

    Do you know whether ferritin/iron are good? Low levels commonly make people feel hyper and hypo when trying to raise dose.

  • Not sure what other bloods were done until i get print out. For a while my bloods have been ok and now totally off, im trying to think whats changed.

    Of all the things i thought was wrong with the last thing i though of was going hypo again after 5 years on meds.


  • Christine, maybe a Crohns' flare up.

  • Maybe but not one thats showing in bloods and no major crohns symptoms. I have mentioned to my doctor that i have numbness in anus area and feel at that time my bowel do not work properly...... Im finding it all a bit of a puzzle at the moment. As you know clutter iv been here there and everywhere to see specialists when the problem could be thyroid again..its so frustrating.

    I wonder what happens to thyroid patients that can not absord at all.

  • Christine, mostly they suffer if they can't absorb sufficient thyroid replacement of one kind or another. In severe cases thyroxine injections may be given.

  • It explains alot..iv never been able to gain weight even though iv wanted to. I wonder if the endo will try and manage this or send me to a gastro....

  • Christine, malabsorption should be checked out by a gastro who will check whether it is due to Crohns or something else.

  • Its shocking that despite all the doctors visits and a diagnossis of thyoid disease and endless symptoms that more thyoid checks were not done.

    Foolishly you believe that once on meds things will keep improving. This has been a real learning curve for me...

  • Christine, seems to me that the first thing a doctor should check when a hypo patient is unwell is TFT. Having established levels are so off, presumably within 12 months, is to check coeliac unless gluten-free, and in your case rule out a Crohn's flare up and check other causes for malabsorption.

  • If being tested for all these weird and not so wonderful rare conditions and the problem is probable right infront of them....

  • Christine, TSH >10 is undoubtedly reason enough to feel extremely bleurgh but someone needs to drill down to find why it rose so much and to fix any gut issue that may be blocking absorption or preventing you tolerating a higher dose.

  • At least its becoming clearer and hopefully the areas to be investigated have become more apparent.

  • It must be something to do with absorption. I've got lymphocytic colitis and when I take steroids (when the colitis is flaring) for some reason my thyroid becomes suppressed. The first couple of times this happened, my GP freaked and made me drop thyroxine, causing no end of problems. Now I know that when the colitis is flaring, I make sure I don't have any thyroid tests! I don't know why this happens, perhaps it's the antibodies going haywire! Clemmie

  • Iv heard of colitis but not the type you have,,,how do the two conditions differ...

  • LC is a type of Inflammatory Bowel disease where the lymphocytes are inflamed. It is associated with other autoimmune disorders such as rheumatoid arthritis ( I have spondyloarthritis). The symptoms are chronic watery diarrhoea and abdominal pain and nausea. They say that the diarrhoea isn't normally bloody but when it started, it was bloody although that hasn't happened in subsequent attacks. And whereas crohnes and UC can be seen on a colonoscopy, in LC the bowel looks normal but it shows up on the biopsies. It is quite debilitating when it flares. Clemmie

  • It must have been difficult when trying to get a diagnosis. Crohns runs in my family as does divicolitis) (not sure of spelling) but im the first with thyroid disease, unless some had it but were unaware of it.

    This is the first time in 5 years iv hit a brick wall with my thyoid since before diagnosis. My bloods have been up and down but never to the point of hypo.

  • I was actually very lucky. I was in Saudi Arabia ( my husband is working there at the moment) and had just been diagnosed with under active thyroid. I became really unwell and thought that I was going to die ( I really felt that ill ). My doctor in Saudi (he's English) is fantastic and sent me straight to a gastroenterologist. I had a colonoscopy a few days later and the results two weeks after that. In fact, even my spondyloarthritis was finally confirmed there, after I have suffered for half my life with back and joint pain. I haven't had to argue or fight for anything as I do here with the NHS! But we are still lucky to have the NHS, with all its faults, at least it's there for us (sometimes!) clemmie

  • Iv been diagnosed with osteo arthritis but have though for a long time its connected to crohns...they say otherwise.

    Maybe you were in the right place at the right time.

    I think your right the NHS is wonderful some of the time and for some conditions. Personally i feel it fails so many of us alot of the time especially when several conditions are involved.

    Is your thyroid stable now?

  • Not yet, I think. It's been very up and down since diagnosis last year and just before I flew home for the summer, my GP out there recommended I see an endo here privately to get some T3 as he said that was the only way I would be able to get it. But with people's help here, I've got some and started it a few weeks ago. I'm just coming to the end of a colitis flare which started early May so hopefully things are started to look up. Clemmie

  • Yorkshiregirl (I'm one too!!) very interested to read your post as I am Hypo then after going downhill diagnosed with raised TPO antibodies which are now almost back to zero after gluten free diet. Feeling a lot better. I had a quick look at your previous posts. Have you been tested for TPO? There is a lot of evidence if you have one autoimmune disease you are much more susceptible to others. Leaky gut syndrome is usual with any gut disease and antibodies are the consequence. I'm interested bacause my Dad has Crohn's only diagnosed when he was 87!! daughter may also have it and granddaughter is coeliac and now grandson is having problems.

    I am very interested by Barrister's comments on LC as the symptoms seem to tie in with grandson's.

    So I would say deffo get TPO checked and if posive try gluten free and see if that helps

    Isabella Wentz is worth a read! I think her book is Hashimotos the root cause. Hope you soon get some answers.

  • My antibodies were over 1000 at the time of diagnosis..ib not had them tested since.

    Iv had crohns since my early twenties with not too many flares with it after i had surgery ,crohns also runs in my family..even so i never susspected i had a thyroid problem mainly due to no weight gain.

    At the moment i need to find out why suddenly iv gone hypo and what can be done if my gut is responsible.

  • Have you tried adding some T3 (liothyronine) rather than increasing the thyroxine? There are many symptoms for hypo and hyper which overlap. I hope you get to the bottom of it. Sandy

  • iv not given it alot of thought to be honest..a short while ago i was converting pretty well. Trying to get a doctors appointment to discuss my options and have follow up with endo in september.

  • Hi Yorshiregirl, have you ever had your levels of B12, ferritin and folate checked? In thyroid these are often low, especially as you may have absorption problems due to the Crohn's. Worth making sure they are checked. MariLiz

  • Still waiting for print out of recent bloods. I think we thyroid patients need to be monitored more often and more so when there are other conditions.

  • If the doctor treats you by TSH results alone, then you need to find a new doctor.

  • Prior to these recnt bloods my last thyoid tests were last year. Looking back i find this very strange as i was seeing my doctor very frequently with numerous symptoms.

    Endo has advised to take the same dosage of meds that iv been taking so no real change there.

  • Many treat themeselves, with meds online, because the doctors go by labs, ignoring symptoms, actually they know anything about low thyroid and it's effects on the body, only treating by labs.

  • Yorkshire girl, my GP and local endo said there was no treatment for TPO's just carry on with levo at same dose. That's when I started to read about Hashi's and went gluten free. The fact that you had part of your bowel removed for Crohn's will have affected your ability to absorb vits and minerals from your food. I am no longer anaemic since being gluten free. My Dad (with Crohn's) is now permanently on iron and B12. Unfortunately most docs deal with one thing at a time and don't join up the dots as to how much gut problems can affect your health and that having one auto immune condition usually leads to another. Holistic medicine is gaining more ground in US, but it will be some time before it impacts over here!

  • Iv read lotss of different expereinces of gluten free diets but never thought of trying this myself. I have a very restricted diet already not for health reasons as such just a fussy eater. Have you noticed a great improvement in your thyroid and general health since you went gluten free.

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