Sorry but this is a long post but im feeling so helpless.
Ive been on levothyroxine for 20 odd yrs, no massive problems except over the years I have had bouts of anxiety, osteoarthiritis and menieres disease. I developed gastritis due to being a stressy person. This flared up badly beginning of august so went to A&E who pumped me with omeprazole and gave me antibiotics. After that I was extremely poorly, couldnt eat or sleep, had hallucinations and dry heaving for days. After a while I started to manage small amounts of food but felt very weak and just not right. I did a home blood test via Thriva which showed my levels of TSH etc were all over the place. My GP wasnt interested so I paid out ridiculous money for a phone call to an endocrinologist who said I was over medicated. I reduced my 100 mg to 75mg for 3 weeks then asked GP for a local blood test. They said I was within normal range so I went back to 100mg a day. The worst thing is my mental health went to pot and was prescribed a higher dose of SSRIs and it got so bad I had to speak to a mental health nurse. I have been so unwell ever since, nausea , fast heart rate, no appetite, red scaly patches on my face and totally bed bound with weird symptoms. My arms feel odd and heavy and constant weakness. I know because ive been bed bound ive lost muscle mass and slso lost 2 stone in weight in 2 months. My body feels like its shutting down but my GP and nurse say its anxiety. Well ive had anxiety for years but never like this. Ive ordered another home test kit for thyroid to test tsh,t3, t4 etc to see if my thyroid has gone hyper again. Im at such a loss now as to what yo do. I cant afford private chat to previous endocrinologist again. My life has just stopped and I cant see a way of recovering. Should I get vitamins checked? Even the diazepam I was given short term havent helped. I just feel theres something not right going on in my body but GPs think im a hypochondriac. Ive been through the sudden death of my husband years ago and recovered from that and other stressful things but always managed to carry on. I find it odd that having a gastritis flare up can have made me fefeel like this and mess up thyroid levels.
Just asking for a little bit of encouragement as to where I should go next. Thank you.
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HelenR23
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I'm sorry that you have had an awful time and I am sure members will respond when they read your post.
We have found that many GPs and some endocrinologists don't seem to be knowledgeable or how best to treat those who have hypothyroidism.
I have found that few doctors nowadays know any clinical symptoms a patient might have who has hypo or hyper and - before blood tests were intrduced - symptoms were the priority and 'natural dessicated thyroid hormones' were prescribed. NDTs have now been withdrawn in the UK and I wonder why due to the fact that it was the very first replacement since 1892 that saved lives from then on.
I had to diagnose myself and if you click on my name you can read about my background.
One of my GPs phoned me and after his statement I told him he was wrong and quoted what we, on this forum, know i.e. that some of us need other than levothyroxine to recover our health. I also told him he was wrong to believe that T3 converted to T4.
Levothyroxine (T4) is usually prescribed and supposed to convert to T3 and many people seem to be able to do so.
Many on this forum have to search for advice,
In the past the only thyroid hormone replacement was called Natural Dessicated Thyroid and it saved lives from 1892 onwards without the need of blood tests as all doctors knew the clinical symptoms, NDTs were made from animals' thyroid glands. The majority of doctors were aware of all the clinical symptoms and patients began on NDTs.
It was surprising that the supposed to be 'knowledgeable' doctors removed NDTs, without notice and causing panic amongst many who were well with NDTs.
When having a blood test for thyroid hormones - a full test would be:-
TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.
All blood draw should be at the earliest and fasting (you can drink water) and don't take replacement hormones until afterwards.
T4 is an inactive hormone and has to convert to T3. T3 being the 'active' thyroid hormone and brain and heart have the most T3 receptor cells.
There are some labs that will do a postal blood test and the link below gives the information. It is a fasting blood draw and don't take thyroid hormones before the blood draw - take them afterwards. If you wish you can have a private blood test:
Thankyou. Everyone is so knowledgeable. Ive never learnt much about thyroid problems etc as I carried on doing what my doctor said and taking the same dose for 20 odd yrs. At least now I kind of understand better although its very complicated. I will always remember to have a blood test before I take levothyroxine.
Just hope I can get this resolved as I cant carry on feeling so unwell. Ive lost a job through this too so its getting pretty desperate now.
I'm sorry you have lost your job and no-one can possibly understand how a person copes with any problems when their thyroid hormones aren't at an optimum.
We are prescribed levothyroxine (T4) initially but some of us cannot recover our health as they may be unable to convert levo (T4) to sufficient liothyronine (T3).
Our body functions when hormones T3 and T4 are optimum but if a person is diagnosed as being hypothyroid, they don't understand why they still feel unwell and it is usually due to their GP not having sufficient knowledge about a dysfunctional thyroid gland nor how to help the patient to restore their health.
I know this or a fact when a GP phoned to tell me my "TSH is too low - T3 too high and T4 too low".
Response: Yes doctor my TSH is low because I take T3 only, therefore my T4 will be low and T3 higher.
GP but T3 converts to T4! "No doctor it is the other way around, i.e. T4 should convert to T3".!
Were your FT4 & FT3 high when Levo was reduced or was specialist going by TSH? That’s often what doctors even specialist do.
Low TSH doesn’t always mean FT4 is high. High FT4 doesn’t always mean FT3 is high sometimes it can be low.
What were your last thyroid results? Add exact results with ranges.
Once you been on a unchanged dose for at least 6 weeks it’s good to recheck levels. Testing & making adjustments quicker than this can cause all kind of confusion. Adjustments should be no more than 25mcg daily at a time
.Do you always get same levo brand?
It’s a good plan to get a full test. Might be a good idea to arrange a set with nutrients too (folate, ferritin, vitamin D and B12) as issues thyroid & nutrients can compound each other & mimic symptoms.
Thriva offers these additional test. There are other companies too which may be easier. (Single kit)
Here’s a link which lists the some companies , some have discount code.
The advance medichecks includes the nutrients & thyroid antibodies too.
When you test it’s recommended that blood draw appointment is booked for around 09.00 or as early as possible, fast overnight (only water - lots for hydration & easier blood draw) delay levo until after draw, & avoid supplements containing biotin 3 days before draw (can skew results in testing process)
.Have previous test been tested like this?
Sounds like your doctor & nurse are happy to pass everything off as related to your anxiety, but your thyroid & nutrients should be properly checked.
If you compare the % level of FT4 : FT3 the balance it is out of kilter.
FT4 is over range. Your body isn’t utilising levo & converting it to the stronger move active FT3.
Most feel well if FT3 is as least half way through range.
Next step test nutrients, poor nutrients can contribute to poor conversion.
Do you think your gastric issues could be affecting apportion. This would affect both absorption of levo & nutrients.
After this result you reduce from 100mcg to 75mcg for 3 weeks then had GP test? Showing in range TSH so restarted 100mcg?
Your thyroid antibodies are negative. most primary hypothyroidism is due to autoimmune, antibodies fluctuate greatly, were they previously positive - when diagnosed?
Yes this was after reducing levo for 3 weeks. And yes the range is the same on both tests.
Ive never looked into thyroid trsting before all this happened as I ticked along thinking this is how it is now. Never felt 100 % since I was in my 20s but didnt realise thyroid could be a problem. My doctors have been rubbish and ive never had a proper test done except the ones ive had via the internet. Only had those done because I couldnt believe how ill I feel and its been put down to anxiety so I decided to get home tests.
I tended to do the test early lunch time at least 6 hrs after taking thyroxine.
I do feel that the flare up of gastritis contributed to my levels. I couldnt eat for 2 weeks after they pumped omeprazole and antibiotics into me. It just seems a bit too much of a coincidence that my thyroid went haywire since then and my anxiety is unbelievably crippling. Not one doctor has ever looked into my thyroid results properly for 20 yrs . Im so shocked at how wrong levels and amount of levo can mess you up completely.
conversion rate? Im going to get another test done from Thriva and do it early morning before any other meds. Can I show you results when I get them please?
It maybe I have under medicated . Im hoping its as simple as that.
Really appreciate the time you have taken to answer my questions. Im definately getting vitamins checked too. It costs me a fortune doing all of this when we pay into the NHS but never get answers. I know the funding has nose dived in recent years but its affecting peoples lives. I really need to get educated myself a bit more now!!
we must have OPTIMAL Vitamin levels for good conversion of Ft4 to Ft3
After Graves’ disease (autoimmune hyperthyroid)and RAI you have zero thyroid function of your own.
It’s extremely common for conversion to get worse the longer we are on levothyroxine, especially after menopause
In part this is because current care is so poor. It’s ESSENTIAL to test folate, ferritin and B12 at least annually and vitamin D twice year when supplementing
Unfortunately NHS rarely tests any …..nor do they suggest that patients might want to organise their own testing
Similarly…..gluten intolerance and/dairy intolerance are both more likely after Graves’ disease
It’s always worth trying strictly gluten free diet…..but BEFORE considering trial….get coeliac blood test done via GP ….or test privately
Only ever make one change at a time…or add one supplement at a time….then wait at least 2-3 weeks to assess
Come back with new post once you get thyroid and vitamin results
I would agree with your last statement. Had I not had info from you all I wouldn’t be here today. It enabled me to understand hypothyroidism and to get my health back again. Thank you
what did you use to treat the immediate symptoms of gastritis?
I have been having gastritis (v low motility) this year and have treated it with laxatives. And then have found cutting sugars out and carbs down immeasurably helpful, again in the short term.
I’ve veering towards thinking what I have is actually something like SIBO.
I wonder what kind of investigations you went through to have your gastritis diagnosed and if you can please describe them here.
Part of the reason I ask is that I have found doctors so quick to leap to conclusions - eg. Acid reflux - without doing any bog standard tests to rule other causes / conditions out.
I have had 2 endoscopes and a CT, and a colonoscopy! But gastritis doesn’t show up in these , does it? Did you do the barium test? I never have.
My symptoms of gastritis improved while I was on the progesterone coil. I think there is a theory than an overload of oestrogen triggers these same intestinal / bowel issues. When my coil came out, the gastritis / SIBO came back with a vengeance. But I didn’t feel great on the coil so I will take it.
Yes im past the menopause now. Ive never had a vitamin test done by GP.
I use Accord levothyroxine and have done for years. Ive just started taking VitD3 supplement. I dont take anything for gastritis as im sure when the hospital gave me it via a drip it didnt agree with me as after that I became very ill.
I used to have hyperactive thyroid 20 yrs ago but had 3 rounds of radioactive iodine and ended up with underactive. My GPs have only ever looked at TSH levels. In fact they never offer regular blood tests, I have to ask for a yearly one to be done.
I always assumed anxiety was due to hyperactive thyroid. Although ive suffered with a low form of anxiety since having thyroid problems but never to this degree. I need to get vitamins tested.
I always take levothyroxine early morning before anything else and follow usual protocol.
I always thought I had high stomach acid because of gastritis. CT scan and Endoscopy show inflammation of stomach lining. My goodness its a mine field looking up about thyroid etc.
I will never take PPIs again. I wont even touch gaviscon either. Ive tried to eat fruit a lot but as I have nausea its difficult to eat much.
I think I had my blood tests about 6hrs after taking my levo so probably not the best. My Vit D3 is mixed with K2 and MK 7 and it says 100 ug which is 2000% RI. Will definately get Vitamins tested. Thankyou.
No headaches. When I had CT scan they gave me some dye stuff. It showed my stomach was inflamed. When I had my Endoscopy last month they took some biopsies but still waiting for results.
Ive never had a coil fitted, im now 59yrs old so not necessary ha ha. My main symptoms for years with gastritis was frequent loose bowels and chronic pain under the top of my ribs.
Much the same thing happened to me in 2013: admitted to hospital and pumped full of PPIs - only not for the same reason. It's taken me nearly ten years to get my intestines working properly again! The PPIs really messed them up. And, what's helped most has been regular dosing with magnesium citrate. I would never take a PPI again.
Oh no!! Its awful isnt it. Ive learnt so much from here today im full of hope now. I will never touch PPIs again either. Its messed me right up ever since !!!
Do you have Graves Disease and why you had RAI thyroid ablation 3 times ?
Graves is an auto immune disease for which there is no cure and tends to wax and wane throughout one's life and known to by triggered by stress and anxiety.
Graves is considered life threatening if not treated as the thyroid is affected so, by removing the thyroid, and flipping you from hyper to permanently hypo it's seen as the ' safer option '.
I've read the dose of RAI is not that exact nor the time lapse from ingesting RAI to becoming primary hypothyroid as RAI is a slow process and much depends on the state of the thyroid this toxic substance needs to burn through and disable.
RAI induced primary hypothyroidism is said to be more difficult to treat.
RAI is known to trash vitamins and minerals.
RAI is known to trigger symptoms similar to Sjogren's Syndrome and fibromyalgia.
RAI is also taken up, to a lesser extent by other glands and organs in the body.
I could go on - but enough - I had RAI thyroid ablation also for Graves Disease back in 2005 and became very unwell several years later - see my profile page.
You might like to read around Graves Disease and Elaine Moore's Foundation website has to be the most well rounded of all I found when researching for myself around 7 years ago - elaine-moore.com
It is essential that you are dosed and monitored on your Free T3 and Free T4 blood test results and not a TSH reading - though I fully appreciate in primary care this maybe all you get and it also essential to see where your ferritin, folate, B12 and vitamin D sit as these need to up and maintained at optimal levels for any thyroid hormone replacement to work well.
Start a new post with all the results and ranges once you have had the full thyroid function test and you will be talked through what it all means and your next best step to better health.
It's where we all start and it's a massive learning curve but it's what we all achieve with the support of this amazing forum.
It's a bit like a jigsaw, taking shape but initially you can't even see the picture - but start reading up, become your own best advocate, and your jigsaw starts to build, one piece at a time.
You might like a book - written by a doctor who has hypothyroidism ?
Barry Durant-Peatfield wrote - Your Thyroid and How To Keep It Healthy - to enable and equip patients to better advocate for themselves and it's a relatively easy read of basic body physiology and how vital good thyroid function is to full body synchronisation - and though we haven' this amazing little gland any longer we do need to know what it does so we can try and compensate accordingly.
Thyroid UK thyroiduk.org is the charity who support this amazing forum and where you can find all things ' thyroid ' including a list of companies who can run the appropriate blood tests for you, some offer a nurse home visit, depending where you live, and there is also a recommended reading list page and think the above book is available on the Thyroid UK website.
Sorry,I had radioactive iodine twice not 3 times. Typing error. I had a massively over active thyroid that didnt respond to the first treatment so I had it re-done. It took 2yrs for my GP to believe I was unwell until I had a big lump on my throat. Then they believed me. I was 29yrs old when I first felt unwell with all the hyper symptoms but the doctor thought I was just over anxious and that was why I was skinny with racing heartbeat. Disgusting really as the damage it could have done if I hadnt showed him how big the lump was. Nothing has changed has it from all those years ago. Im still categorised as being anxious and totally ignored even though im 59yrs old!!!
Well yes, you sound typical of someone dealing with Graves Disease who isn't optimally medicated ;
I'm 75 with Graves Disease and now self medicating and buying my own full spectrum thyroid hormone replacement as the NHS call me a conundrum which just makes me more upset and angry - so now I stay aware and look after myself and much improved.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10mcg plus a measure of T4 at around 100 mcg - T3 is the active hormone that the body runs on and said to be around 4 times more powerful than T4.
T4 is a storage hormone and needs to be converted in your liver into T3 the active hormone and it is too low a T3 for you that gives you the symptoms of hypothyroidism, just as too high a level of T3 would possibly give you symptoms of ' hyper ' and over medication and since you haven't a thyroid you can't become ' hyper ' in the true sense of the word as there is no thyroid there, but you could perhaps become over medicated if your T3 was well over the range.
Your ability to convert the T4 into T3 can be compromised by non optimal levels of ferritin, folate, B12 and vitamin D, inflammation, any physiological stress ( emotional or physical ) depression, dieting and ageing.
Some people can get by taking T4 only.
Some people find that T4 seems to stop working as well as it once did and by adding in a little T3 and replacing that little bit lost, they feel their health restored.
Some people can't tolerate T4 Levothyroxine and need to take T3 only - Liothyronine.
Whilst others find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroid dried and ground down into tablets referred to as grains.
Thankyou for that info. What concerns me is when my new results come back if I show my doctor he will think im self diagnosing due to my anxiety. Im guessing he would not take it seriously. Its so expensive to find a private consultant as ive now lost my job due to being unwell. I think I will have to be pushy with my doctor. Im going to take a look at the book you mentioned. Thankyou again.
The accepted conversion ratio of T4 into T3 is said to be 1 - 3.50 - 4.50 - T3/T4 with most people feeling at their best when their conversion comes in this range at 4 or under.
To find how well you covert the T4 into T3 you simply divide your T4 by your T3 and with a T4 of 29.40 and a T3 of 4.20 - as detailed earlier - your conversion is very wide of the centre and out at 7.
There is obviously an absorption and conversion issue and you must switch to an alternative treatment option.
What about asking your doctor for liquid T4 - to see if it's better tolerated in the short term ?
Sorry to read you have lost your job as this will likely fuel your anxiety and stress - share whatever you want on here and vent away - as many here have been in a similar predicament.
Thankyou. The trouble is my doctor got a bit funny when I asked if my thyroid tests were correct. Due to anxiety he thought I was over thinking but as everyone says, they only look at the TSH range and dont test anything else. Im now labelled as an anxiety nutter. I had a similar thing with vestibular disorders. It took 4 yrs to get to have proper tests and it came to light it is or could be Menieres disease but tests did show id lost a bit of hearing snd my vestibular system wasn't functioning correctly. We live in a small village with a handful of general doctors and they are all the same. They try their hardest with limited funding I suppose. I hate to be pushy but I think when I get my latest thyroid test back I am going to try and get tougher and ask for a referal to someone with thyroid knowledge.
The results are likely correct but they are incomplete?
Doctors are too quick to glance at results & ignore anything in lab range, do the look at history?
Do they look at the whole person?
If the doctor can fob you off as due to anxiety then there work is done they can deal with the next person.
You have every right to “push” or persist regarding your own health.
If you are being prevented from working and being well, then doctors should be treating you.
Always be polite & calm (because if your not, its just another excuse not to deal with you) but don’t give up & make it clear you’ll keep be coming back if not resolved.
In the past If I’ve been waiting for an update for example & been told to wait it’s being worked out - I’ll hear soon. I’ll say I be calling back in eg tomorrow at 16.00. They usually get back to me sooner.
We can have sympathy for how under pressure doctors are but they are trained to detach themselves, so I think we should be doing the same with doctors & not feel guilty for advocating for our own health.
Yes, I understand but liquid T4 isn't an unreasonable request as your T3 and T4 are totally out of hormonal balance and you are very unwell - you doctor can prescribe liquid T4 much sooner than it's going to take you finding someone else to help you.
Liquid T4 it's more expensive but medical need should over rule the cost and your doctor has a duty of care and it's worth a try as it should be better absorbed.
Do you feel like the pain from the gastritis has subsided? Can you tolerate bone broth? If so, make it your best friend. Dgl, fish oil, zinc carnosine and vit d3 with co factors will help the lining of your stomach and inflammation. I can share the brands that helped me if youd like. I still use them. Someone mentioned sibo earlier, it might be wise to take a test if you can afford it since antibioticscause dysbiosis. The ppi and antibiotic you took im assuming were a triple therapy to eradicate h pylori since it causes gastritis. My system went haywire after taking the 2 antibiotics plus a ppi.
Folate, b12, ferratin, vit d3 will help with conversion. That said, as others mentioned youre a poor converter. Maybe its time to look into combo treatment to help your overall health.
Also want to say that docs love to gaslight their patients. No your thyroid levels arent normal and yes the state of your gut and thyroid health is directly linked to your mental state. I was told for over a decade that i was just depressed and my levels were fine but they were anything but. Im an extremely poor converter.
Edited to add: slippery elm gruel does wonders. It coats the lining of the stomach to protect it from the acid. Its in the supplement that i recommend to you. I need to caution you that it can reduce the absorption of medication since it coats the lining. I took it at night, 1 or 2 hours after supper.
Honestly i couldn't touch it for several yrs after i got gastritis. It had to do with the histamine. Some ppl are fine but others its a problem. I even bought it in powdered form from the supplement store and that didnt worwork out. The homemade broth caused pain and the powdered version caused palpitations. Another option is to buy beef or chicken gelatin. Both are extremely nutritious and very helpful for the lining. As for a recipe, i dont really have one. Just by bones from the butcher, chicken, beef or ox and boil it in water. Id say add salt but its a known irritant for gastritis. As mine is in remission currently, i just put the whole chicken legs, skin and meat included and boil it in salt. Pls dont do that. The skin is too fatty and will aggravate your gastritis.
It wasnt one thing that helped me but a bunch. There are a few supplements that contain several things that have some research behind them and they were instrumental in my healing. Ill post a pic of one of them. Its pricey but at least you dont have to purchase them individually.
For breakfast, lunch and supper i rotated on white rice and steamed frozen veggies, sardines, tuna, salmon, chicken breast/cubed beef cooked in water and a little salt, oatmeal cooked in just water until my flare up stopped. Nothing acidic and no spices. The fodmap was helpful. Salt and fat were my main triggers so i limited them. To get enough iodine, i took it in a kelp supplement that was around the recommended amount.
It is always worth optimising nutrients and then to take a lower dose to maintain those optimal levels where they are.
This is just a personal anecdote that might not apply to anyone else, but I used to suffer from depression and anxiety (the depression was the worst of the two). I found that optimising my iron, or getting it as close as I could to optimal and maintaining it there, eliminated my anxiety completely and reduced my depression a lot.
Hello there, I have no words of wisdom I'm afraid but we do sound very similar. My mental health is suffering horribly at the moment, I'm having very dark days. The people on this forum are just amazing. I'm working on healing my gut and a recent blood test showed I'm low on ferritin so eating lots of iron rich food. Please feel free to message me if you just need to vent. I completely get it. Xx
Sorry to hear you are suffering too. Its so hard to adjust the diet when im not motivated. Ive had fantastic advice from everyone on here its a great forum. Im going to get my vitamins checked asap as I didnt realise how much it can affect your thyroid and the gut if your lacking in vitamins. Hope you succeed in getting good gut health and thankyou for your reply.
Sorry to hear you are so poorly, have you been tested for Heliobacter Pylori bacteria as this can be detected with a stool sample. This little fiend can cause all sorts of gastric and lower stomach troubles.
hello HelenR23 i just wanted to wish you luck in getting better. It must be so terrible for you at the moment. Don’t give up……. the advice on here is phenomenal x
I am so sorry you are going through this. I had an extremely similar experience which turned out to be a reaction to an antibiotic. Which antibiotic did you take? X
I was given amoxicillin and clarithromycin and omeprazole. I managed all of the amoxicillin but the other one I could only stomach 2 days worth as I felt so ill.
I’m exactly the same as you as per anxiety. I had my thyroid removed 16 months ago due to graves, I always had anxiety if my levels were too high but I was able to manage it with carb but I cannot find a solution to my debilitating anxiety, endo nurse has basically said nothing she can do !!
Im so sorry you are suffering like me. I can honestly say ive never felt so ill. Im trying everything to help myself but the costs sre crippling me. Do you have your thyroid tests done regularly? Ive just done yet another home blood test so awaiting results and then I will post them on here for some advice. Its been a double whammy for me as my thyroid meds aren't doing the job and ive had chronic Gastritis so im trying to sort both out buts its hard when I can hardly get out of bed because of anxiety and nausea.
Ive started counselling but to be honest unless I can get my health sorted then my anxiety is always elevated. This time its so extreme like never before so there must be a link to my thyroid/gastritis as they are the only trigger points I can think of this time.
We don't have an endo as we live on the Isle of Wight and just see a general doctor. My doctor is not helpful at all. Im hoping when my anxiety reduces I can ask my doctor to refer me to an endo in our one and only hospital. Waiting times can be up to a year!!
Before your thyroid was removed did you have anxiety badly or was it due to hyperthyroid?
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