My story, no one believes, no one takes it seriously, doctors don't look for connection, treat separately or not at all.
Spring 2015 poland, on a hunch I visit endo, ultrasound = suspected hashi, blood test to confirm = tsh 4.9 (0,2-4,5), ATPO ATG triple the norm.
Summer 2015 UK, I started to sleep 13h+, weakness, brain fog, concentration problems, depression, etc. I visit gp, after viewing results sent me straight to endo. Trainee endo, total ignorance, lots of stupidity, i gave up (in one of my other posts). I wrote a complaint, head endo gets back to me invites for a visit.
Early autumn 2015 Poland, I suspect low b12 so i have done the test, very bottom of norm.
Early autumn 2015 UK, Finally meet the head endo, I feel better, treatment not recommended. Finally taken seriously, he said we should keep an eye on it, if I start feel bad again we can start treatment.
Winter 2015 UK, first neurological symptoms, i hit the door while walking, fingers tingling and numbness, visit gp, b12 below norm, set of injections and check up in 3 months. Beginning of GF diet, and test for dairy intolarance (negative)
February 2016 UK, check up, "inconclusive" delay one month for another check up
March 2016 UK, check up, b12 still low, not much of an effect after injections. GP write to haematologist for a consult. Diagnosis of pernisious anaemia without antibody present (family history and my blood results), celiac not diagnosed, antibodies negative. Beginning of every 3 months injections.
End of March 2016 UK, Stomach pains after meals, diareha, constant bowel movements, black stool for short period of time. When i visit gp stool wasnt black anymore, gp doesnt detect anything, stool checked and all fine. Symptoms stops and i forget it.
September 2016, Beginning of busy life, unable to keep GF diet, back to gluten.
November 2016 UK, Extreme weakness, same symptoms from summer 2015, gp, blood test. TSH 4.8 (0.2-4.5), freeT4 13 (9-21), haemoglobin 113 (115-160), Red BC Count 3.52 (3.8-5.8), ferritin 19 (15-200), Serum folate 4.5 (2.8-20). Supplementation of iron began gp "no connection between b12 iron and thyroid function" bad diet heavy period.
Symptoms get worst, stomach pain after meals is back, and other old digestion symptoms too. No black stool present. Gp again, blah blah blah reference to gastro, cant be connected but if it calm me can be done.
My gp blames my diet for having low blood results, my mom blames GF diet for bad results. (I got nutrition knowledge after university "food technology and human feeding") No one believes that something is wrong, no one notice that when my thyroid goes crazy my results gets worst and i get worst, no one see the connecection.
What is wrong me, looking for advice please...
Thank you in advance and sorry for mistakes.
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madness07
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Can't comment on all of it but you seemed better on GF diet?? I was undiagnosed thyroid for at least 10 years and by the end of it, I was bumping and knocking into everything - nothing really improved this til on T3 . concurrently, I had spent most my life with brain fog and falling asleep every where with a sleep disorder similar to narcolepsy and only gluten free got rid of this fifteen years after thyroid diagnosis. Had stomach issues since a toddler. I would take coeliac test results with a pinch of salt as they have now diagnosed me with something the same as coeliac but diagnostically different as test negative for coeliac but the NHS consultants had to give it as complete reversal in too many autoimmune issues including type 1 diabeties, adrenal failure and partial thyroid - which obviously can't be in my head! Basically the newer the issue, the more it reversed. Also bear in mind that coeliac cannot be written off without biopsy anyway, blood tests are not good enough. There are things in mind to bear on gluten free diet such as increasing your iron from more natural sources but otherwise should be fine as long as you are eating healthily enough. I am also still having issues withh B12 but they are currently looking into it so we'll see what happens. They are all connected but funnily enough, although I'm often aneamic, I am always more aneamic when my thyroid is better lol!!
I'm sure you're already aware, but treatment for iron causes black stools - were on this at the time?
In my case, one thing I do know is that the thing that buggers them all up the most is gluten lol!!!
the only thing I can add is my sons experience, very very similar story....he was low b12,exhausted, high tsh but free t3 and free t4 ok, no antibodies so we saw a naturepath dr and put on 5000 methcobalwin b12 for two months under the tongue melts then 1000 daily, a probiotic before bed every night hence their is a gut connection to health problems, a whole foods diet elimating most processed food and had to eat 3 meals a day with real food , told to stay away from peanut butter since he ate a lot of that, omega 3s daily twice a day, a food grade fruit vegatable vitamin non gmo, and in two months he was a different person......he also had to go to be earlier and get no less than 8 hours sleep a night.....
I can't comment on all of it, but I didn't see a mention of you being prescribed Levothyroxine or any other thyroid hormone. With a TSH as high as yours you need treatment because you are hypothyroid.
End of March 2016 UK, Stomach pains after meals, diareha, constant bowel movements, black stool for short period of time. When i visit gp stool wasnt black anymore, gp doesnt detect anything, stool checked and all fine. Symptoms stops and i forget it.
I'm curious how this test was actually carried out. It can be performed in various ways. How many samples did you provide? In a screening test for bowel cancer the standard practice is to provide 6 samples. If you only supplied one sample it may have had extremely low reliability.
A few years ago I had blood in my faeces. It wasn't a small amount, it could be seen very clearly. I had a faecal occult blood test where a single sample was tested. It came back negative, despite my protestations that the blood could actually be seen. Nevertheless I was told that I was fine.
I later did some research and discovered that false negatives can occur in people who take vitamin C supplements or who drink fruit juices that are high in vitamin C. In my case I was taking high dose vitamin C. I spoke to my GP about it after I found this out and she was completely unaware that this problem even existed, and didn't suggest repeating the test.
In the end it turned out I had a very large polyp in my colon that was bleeding profusely.
Have you considered that you may have a chronic infection (mycotoxin illness, Lyme Disease, viral infection), MCAS and/or heavy metal toxicity? These can all be responsible for low thryoid function, but sadly are not recognised or treated in the UK. We had to travel to the USA for diagnosis and treatment. Jane x
Saggyuk, I have the same feeling that I was better on gf diet. But I don't know anymore. And yes I know about stool, but first time I had digestion system problems was nearly year ago. I was not supplementing iron that time. I just had stool of similar to now after iron. I would like to point that I was suffering for over two months before symptoms stopped and I forgot about it.
Humanbean, I never started the leva treatment as by the time I got to proper endo finally, my tsh dropped and symptoms got better. Stool was taken once with suspicion of parasites, but shortly after symptoms stopped so I forgot about it, thought mb I got better and that's it. Even I know one sample is inconclusive but gp never proposed any other. Never heard about vitC effect but I do drink a lot of juice.
Janeb15 I'm from northeast side of Poland where thyroid disorders are very common, that's why my polish endo suspected hash immediately. It's suspected that it's due to czarnobyl reactor in Ukraine and iodine liquid in huge amount after given to ppl. In UK they dont really recognise thyroid problems. But for me it's not a surprise, my sister had just benign tutor removed from her thyroid. My mom had suspected autoimmune hyper. Anyway no-one ever mention anything u said above, so I have no knowledge or idea about that.
Mb I should mention I'm a cabin Crew I'm flying since 5 years my sister says that mb that is reason for my worsening health.
Given that your ultrasound indicated Hashi, your TSH in spring 2015 was 4.9 and your thyroid antibodies were above the range you were (and still are) obviously hypothyroid and need to be put on thyroid medication asap. As you have Hashi your TSH will fluctuate (normal to low to normal, it might even get elevated) but eventually you will end up hypothyroid. Synthetic T4 (levothyroxine) would be a good start as, contrary to the impression you might get from this forum, most people tolerate it well, it’s easiest in terms of dosing (once per day) and it has a half-life of 7 days.
Synthetic T3/T4 combination, natural dissected thyroid (ndt) or synthetic T3 are the other treatment options BUT it is currently very difficult to get T3 or ndt prescription in the UK. However, many of us get T3 and ndt from abroad. T3 and ndt are not available in Poland.
I don’t understand why the endo, who diagnosed you with Hashi in Poland in spring 2015, didn’t prescribe levothyroxine immediately. Polish TSH norms are 0,270 – 4,200 (ICD-9). The view is to treat asap if TSH is elevated (as opposed to the view in the UK: “we don’t want to put you on the medication you will have to take for the rest of your life” and “wait until your TSH is 10 or above” type of c**p). Unfortunately, in Poland the treatment is only with levothyroxine so overall situation of hypothyroid patients isn’t much better than in the UK. I think it’s best to be hypo in Greece, Germany or in the USA (but other HU members might disagree
In terms of getting the diagnosis and the prescription, you could do the following:
- if you happen to visit Poland any time soon (work? Christmas?) you could visit a private endo. It will cost you much less than in the UK. Based on the tests you already have they will prescribe 25mcg of euthyrox by Merck KGaA, and letrox by Berlin-Chemie AG. Letrox has fewer fillers; therefore it’s less likely to cause an allergic reaction. Legally Polish doctors are allowed to give you prescription for THREE months. Once you are back in the UK, you could present your GP with a fait accompli: “I’m already taking thyroid medication and I request thyroid blood test in 6 weeks”. You will need to make sure your TSH, and ideally, your Free T3 and Free T4 are tested after 6 weeks with a view of increasing the dose. You may have to pay for the FT3 and FT4 tests. They have different brands of levothyroxine in the UK (not euthyrox or letrox).
- Another option would be to see a private GP or a private endo in the UK. If you decide to choose this option, it would be a good idea to find out the names of private docs available in your area and ask other HU members for advice and their experiences with the doctors. Many GPs and endos work both for the NHS and privately so it’s worth finding out whether it is worthy seeing them before you waste your time and money. This option will cost you more (private docs are far more expensive in the UK) and will be more risky in terms of getting (or not) the diagnosis and the prescription. On the other hand, it would appeal more to your GP. They can be a bit suspicious towards foreign diagnoses and tests.
You will get gastrointestinal symptoms as a result of hypothyroidism (constipation, bloating etc.) so I would focus on getting your thyroid hormones sorted out first. We don’t produce enough stomach acid and digestive enzymes when we are hypo. Hence the symptoms.
I’m sorry I cannot comment on your diagnosis of pernicious anaemia, as I don’t know anything about it.
I hope it helps.
Take care
Kitten1978
P.S. Hypothyroidism is a systemic illness: it causes problems with lots of other systems within the body e.g. cardiovascular, gastrointestinal etc.. That's why it's important to sort out your thyroid hormones first.
Thanks for your replay, my polish endo diagnosed me while i was feeling ok, it was complete random that i had been tested (my mom imagined goitre, which i happened not to have but the hashi popped out). So he suggested that since i feel well maybe i should wait a bit with medication. However i mentioned that i am thinking about pregnancy so he said if im pregnant i need to start treatment immediately, so i happen to have leva in my drawer ready to use, i am just not sure if i should use it for any other reason than pregnancy just yet.
I dont have problem with getting leva from my endo in uk either, as he offered me test treatment for 3 months if i want it, but since my symptoms were gone by the time i have seen him i didnt take that opportunity. However if i need to i can come back and get it.
The whole point is, is it really my thyroid giving the symptoms or is it PA or iron deficiency. I kind of did not want to start leva until im not sure that it is thyroid giving symptoms as all this problems have identical symptoms. I am trying to understand what is happening to me and i want to take it calmly, dont want to overreact and start treatment if i dont need it just yet, or maybe i do, since i perfectly know what hashi means. But i learned that not every hashi suspect develop full blown hashi. Maybe im still hoping i will not get worst. To be honest i just dont know what to think and thats why im here.
If it is hashi's flare i had over a year break in between and it was just two of them, but if there is other issue developing in my gut making me not able to absorb stuff, then maybe i will not develop hashi and i dont need treatment. Maybe is just wishful thinking i just really dont know anymore. Or maybe because i stopped GF diet i made hashi flare to happen again? Polish doctors and british doctors and my family everyone makes my confusion get worst.
Yday my gp gave me antiacid, and i know thyroid problems make acid go low and may cause gut problems, so knowing it i took the medication... If it will make me better i will have no idea whats going but if it will make me worst then it will kind of direct problem towards thyroid, am i not right?
Its so damn complicated, i am so scared being aware of thyroid problems i was rushing into pregnancy, we were about to start trying, but with the blood i have now i just can't, and then thyroid is worst which makes me even more scared.
If I were you I would take the Levothyroxine because TSH 4.8 is over range and you are hypothyroid which will be causing some of your symptoms as will low iron and pernicious anaemia.
Positive thyroid antibodies for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies. G-F can be helpful in improving digestive issues, diarrhea and constipation too.
For maximum absorption Levothyroxine should be taken with water 1 hour before or 2 hours after food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements and oestrogen.
It takes 7-10 days for Levothyroxine to be absorbed before it starts working and it will take up to six weeks to feel the full impact of the dose. Symptoms may lag behind good biochemistry by several months.
You should have a follow up thyroid test 6-8 weeks after starting Levothyroxine. Arrange an early morning and fasting (water only) blood draw when TSH is highest, and take Levothyroxine after your blood draw.
I am not a medical professional and this information is not intended to be a substitute for medical advice from your own doctor. Please check with your personal physician before applying any of these suggestions.
Thank you, very much, so do u think i should go back to see my endo and speak with him, and ask him to start me on levo after all even if symptoms i experience now may disappear by then?
Why not see whether your GP will prescribe Levothyroxine. If not, see your endo. You have a lot of symptoms, maybe not all due to thyroid, but with TSH over range symptoms are likely to get worse not better without Levothyroxine.
I think i prefer to speak to my endo, i like my gp but she isn't up to this task. I think so after her saying that none of this is connected. I will arrange appointment then, thank you.
I’m glad your GP is happy to treat you for hypothyroidism. Getting the diagnosis in the UK in a nightmare for many people ;(
You would definitely need to start treating your hypothyroidism (under your GP’s care) if you are thinking of getting pregnant. If our TSH is high you may have difficulty getting pregnant in the first place. The risk of miscarriage and medical problems for you and for your baby would be higher if you are untreated (including lower IQ). I don’t meant to scare you. I’m just saying that if you are serious about getting pregnant you need to start taking thyroid meds. For the sake of your own and your baby’s health. It takes few months before you get to the point when your TSH is within the range. TSH norms for pregnant women are much lower and narrower than for the rest of population:
- it is not uncommon for people with hypothyroidism to have pernicious anemia as well and vice versa. Both conditions can be caused by autoimmune attack and autoimmune problems often coexist: thyroiduk.org.uk/tuk/resear...
- people with hypothyroidism often suffer from vitamin deficiencies as the lack of thyroid hormones affects digestion and absorption of nutrients.
I appreciate that you don’t want to take thyroid meds too early. However, I understand that you are getting regular B12 injections and yet some symptoms still persist. You wouldn’t be on this forum if you were feeling 100% well. Either your pernicious anaemia treatment is unsuccessful or there is something else going on (e.g. Hashi).
Is your sister or your mum taking levothyroxine? Is there anything you are afraid of with regards to starting thyroid meds? I know many HU members are disgruntled about thyroxine but most people are fine taking levo (including my sister and my mum). People who get on with levo don’t spend time on the internet forums.
It takes time for Hashi to destroy our thyroids. I had slightly elevated TSH in 2011 but it returned to normal a couple of months later. The only symptom I had at that time was tiredness. I wasn’t diagnosed until December 2015. If I could turn back the time I would have preferred to be treated earlier. It would have saved me from a lot of stress caused by untreated Hashi.
Other people can only provide information and share their experiences. It will be up to you to decide when you start treating your hypothyroidism.
Take care and all the best
Kitten1978
P.S. Antiacid does sound like a bad idea for a hypo patient. You are likely to produce insufficient amount of stomach acid. Here is a simple test you can use to figure out whether you have too little or too much stomach acid: scdlifestyle.com/2012/03/3-...
1. Mix 1/4 teaspoon of baking soda in 4-6 ounces of cold water first thing in the morning before eating or drinking anything.
2. Drink the baking soda solution.
3. Time how long it takes you to belch. Time up to five minutes.
“ If you have not belched within five minutes, stop timing. In theory, if your stomach is producing adequate amounts of stomach acid you’ll likely belch within two to three minutes. Early and repeated belching may be due to excessive stomach acid (but don’t confuse these burps with small little burps from swallowing air when drinking the solution). Any belching after 3 minutes indicates a low acid level.”
Thank you very much, pregnancy it's smth very important to me. I really should get in touch with my end, guess I will do it. Thanks for info with that test I will try it out before i take anti acids. No-one in my family took Levo or anything else of this kind. I hesitate only because as I said above not everyone who has tsh elevated develops full blown hypothyroidism. And if I start taking it thyroid get used to and doesn't produce on it's own anymore. Which means I will not be able to stop in case afterall that I will not develop full blown hashi
- post-partum thyroditis, which affects some women after giving birth.
Given that you have elevated TSH on a number of occasions, Hashi antibodies three times above the range, your Free T4 is still within range but low, you have had the symptoms for some time (although they come and go), you come from the part of Europe which was badly affected by Chernobyl disaster, your two family members have experienced thyroid problems (sister- the tumour and mum - query Graves) it is unlikely that you suffer from anything else but Hashimoto. Hashi takes time to develop but it doesn't go away. It slowly deteriorates. As Clutter advised, it would be wise to get in touch with your endo and start taking levothyroxine. Take care
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ready to use, i am just not sure if i should use it for any other reason than pregnancy just yet. 
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