Hello. This is my first post. I was diagnosed with primary hypothyroidism in May 2013. As the months went by I found myself up to 125 micro grams of Levothyroxine.
I felt no better on the 125. I went through a very long spell of depression and I was feeling too depressed to look after myself. My parents called me a hypochondriac too. Because of these reasons I stopped my levothyroxine. I wanted my family to see just what would happen if I was without thyroid hormone replacement in the hopes of proving them wrong and for them to apologise for calling me a hypochondriac.
The endo I was seeing wasn't much help, ignoring an over range TSH and refusing to investigate symptoms of hyperthyroidism - weight loss, tremor and sweating. I complained about this to PALS. The endocrinology department then discharged me.
I went back onto Levothyroxine, fed up of having to prove my illness to my family. I ended up on as much as 175 micro grams. Another endo recommended I take T3 because of problems converting T4 to T3. My levels improved but I still felt hypothyroid. I do think it was due to low vitamin levels at the time.
I am in a tough spot with my third endo who took me off T3 because he is only pro Levothyroxine and so I am now appealing to the helpful folk on here as to how to acquire T3, if I really need it or if I could go on to NDT?
2 of my GPs have said they are happy to monitor me whatever I choose to do but I am wondering if I should ditch this endo if he is being so difficult and not worry about him?
I have a long history of irritable bowel symptoms, bumpy rashes on fingers, dry rashes on face, joint pain, night sweats, heavy cycles, feeling cold, dry eyes, fatigue, breathlessness, difficult swallowing, headaches, flushing (at 33 years old), rib and hip pain, dizziness. Within 10 mins of eating anything it comes also get days where I feel almost well and then suddenly crash, the feeling well episode I previously had lasted for about a week, no idaa why.
Thanks
25-APR-2018 - 150 micro grams Levothyroxine
TSH - 4.38 (0.27 - 4.20)
Free T4 - 17.4 (12 - 22)
Free T3 - 3.9 (3.1 - 6.8)
Thyroid peroxidase antibody - 275 (<34)
Written by
Jaye8
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Presumably you know that your high antibodies confirm you have Hashimoto's? ( also called autoimmune thyroid disease )
Have you been tested for coeliac or are you already on strictly gluten free diet?
What about vitamin levels?
Have you had vitamin D, folate, ferritin and B12 tested recently. ? Can you add results and ranges and say what supplements you are prescribed or taking
About 90% of all primary hypothyroidism in Uk is due to Hashimoto's
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
UK GPS prefer to call it Autoimmune thyroiditis - so your GP might just have been being ignorant of the terms used in other countries - or might be mathematically challenged and not able to read the blood test correctly.
These were checked in April 2018. I take 3000iu vitamin D since September 2017 and 1 iron tablet since February 2017. GP said folate only just under range, no action required. My folate has been under range twice. Also have low calcium.
ALL of them are low/borderline. No wonder you don't feel well. Your iron tablet isn't enough. Someone should be along to recommend some good supplements.
And you clearly do have Hashimotos, no idea why anyone would say otherwise.
Thank you for reply. I asked the GP in 2014 if what I have has a name, she said "no it doesn't" and handed me a leaflet from positive steps (a mental health service) I didn't read the leaflet after the appointment.
Thanks for reply. I haven't yet been booked in for a coeliac test because the GP surgery can only book me in for bloods 4 weeks in advance. I have been doing the gluten challenge for about 2 days.
in part because your Thyroid is inadequately treated
TSH should be around one and FT4 towards top of range and FT3 at least half way in range
What is GP doing about all these low vitamin levels ?
When is endoscopy arranged for, should be 6 weeks maximum after positive coeliac blood test
Iron tablets need increasing to 3 x per day
You will need full testing for Pernicious Anaemia before starting B12 injections. Folic acid supplements should not be started until 48 hours after first B12 injections
Vitamin D, dose needs increasing and also look at importance of adding magnesium supplements and vitamin K2 Mk7 as well
Thanks for reply. The GP surgery cannot book me in for coeliac blood test yet because I have only been into the gluten challenge for 2 days or so and they can only book appointments for bloods 4 weeks in advance.
The GP has said folate only just below range, B12 normal, ferritin normal despite haematology wanting it at 50 or above.
I was taking 800iu D3 from Jan 2014 to January 2017 and then went to 3000iu D3 which was an oral spray by Better You with K2-MK7 already in it back in September 2017.
As long as you have been eating some gluten daily (and it's in all sorts of products - cereals, sauces, biscuits, cakes etc) then you could be tested now.
Thanks for reply. My diet has been really awful over the past few years because of difficulty swallowing and I have had my thyroid swell up on and off. My throat muscles are very weak and I have had several choking fits so as a result I have not really eaten that much in the way of bread, pasta, etc that I know is high in gluten.
symptoms of folate and B12 deficiency overlap considerably with thyroid- and include difficulty swallowing. There is something like a 40% chance of developing auto-immune thyroid problems if you have PA - the most common problem causing non-dietary B12 deficiency ... and studies show 10-40% for the likelihood of developing PA if you have auto-immune hypothyroidism.
This may be difficult to prove to your in relation to folate/B12 give you say above that your diet has been really awful do to the problems swallowing.
I meant my diet has been really awful due to eating a lot of chocolate and sugary foods but I do manage to eat a lot of vegetables and fruit when I can. I can eat chicken and lamb but not beef because I find it a very dense food to eat.
folate is found in fruit and veg. So, looks likely that folate deficiency is not dietary. If you have a folate absorption problem that makes it likely you will also have problems absorbing B12
I was diagnosed with Chronic Fatigue in 2000, one of they many symptoms was difficulty swallowing, for which I took 4 Blackmores Magnesium tabs with dinner. The problem disappeared in a week. The tablets contain Potassium phosphate 33mg & Magnesium phosphate 65mg.
It's good you've come on board here, you will get help. You are autoimmune and this may not be easily understood by the medical team trying to help you. My situation is totally different from yours, but, the NHS " in ranges " for vitamins and minerals are not OK for us - we need to be optimal for any hormone replacement to work effectively. So, improve these yourself. In my experience if you are in the NHS range irrespective of near the top or the bottom you are consider OK and offered no help - and told you're fine. Vits and mins can make a massive difference and you can influence this part of your treatment. It maybe that your doctor is ticking all the boxes that he/she needs to do in order to fulfil a duty of care but it isn't necessarily helping you - if you can work with your doctor fine, but if not, when you feel the time is right for you, consider changing - I know easy to write and so much harder to action as we believe they all know what is best for us. Read all you can, equip yourself, start to build up your knowledge of your condition, to enable you to get answers and a treatment plan that does make sense - you have had some good advice in previous posts, I'm still with " L " plates, it's confusing when well, let alone when not able function and feeling as though you are falling apart! You will get better, you can do this.
your b12 is far too low, you need to be on b12 injections, that would likely make you feel a whole lot better. Have you had your antibodies tested in relation to b12? Intrinsic factor and parietal cell antibodies, MMA and homocysteine look at functional levels, and active b12 measures your absorption. All of them have their problems but its a good idea to ask the dr to test them. Being antibody negative doesn't mean you dont have pernious anaemia but if its positive you do. I would really push for injections and if they wont you can get them from various clinics and many people self inject after having their first at a setting. Dont take supplements of b12 at this stage coz it will falsely elevate the serum. Google Tracey wittys website. Its a fantastic resource about b12.
hi jaye8. Can I confirm that the level of 192 was on 3 monthly injections? If so that is a very poor level. I would consider doing your own, a lot of people do daily or every other day as 3 monthly just isnt enough. Although the serum b12 is not reliable in the presence of supplements or injections yours at 192is way too low when on injectios, getting it and keeping it >1000 is the ideal on injections, for nerve repair. Do you have any neuro symptoms? Numbness and tingling, crawling sensations? Carpal tunnel, word finding issues, poor memory, electric shocktype sensations and pain in arms, legs, neck,back? You could ask your GP to increase injections in line with the bsh guidelines, alternate days until no further improvement, its worth a go but ultimately self treating may be less stressful. You need folic acid or methyl folate alongside the injections, as well as to bring up iron, vit d to optimal too. A b complex with or without b6, but a lot are sensitive to b6 and no more than 10mg of it on 3 months on, then break, desert harvest do a b complex without b6. Ask GP to test b6. Magnesium is very useful and supports vitamin d, a non natto or soy free k2 is good to support d too, sports research do one. I find magnesium malate wakes me up and mag glycinate helps me sleep, you can do a combination. I think the company is naturplus on ebay they do a good quality vit d soft gel, 5,000iuor 10,000 iu they are better than what gp gives and vit d needs a fat or oil in it for better absorption, these are cheap too. Soft gel or sublingual are much better than tablets.
Other people here have addressed your test results, so I'll just leave some brief advice about dealing with people who don't believe illness they can't see - in this case, your own parents.
I hope I don't offend you by the comments I'm about to make about your family, but I had a family like yours and for such people - you'll meet many of them through life - nothing less than a cardiac arrest, the Big C, a partially severed limb dripping blood, or suppurating plague sores will convince them that a sick person is not a moaning malingerer. Such people may take their own health crises very seriously indeed though.
There is nothing you can do to change this kind of attitude, born of a closed-minded and judgmental approach to people whose personal circumstances appear different from the 'norm', combined with an intense fear of their own mortality. So please, never alter your medication or damage your own health to prove a point, because you will never succeed in proving it. I hope the advice you've had here will start you on the path to improved health and well-being. Best of luck. x
Actually, your wonderful response has just reminded me of an occasion when my 'best friend' announced that my excruciating PMT (which I suffered with at that time; for 3 weeks out of the 28 day cycle) was 'all in my head'...…
I cannot describe how much that hurt; just because she was a stranger to PMT, then obviously it didn't exist and I simply had mental issues......
Who needs enemies when you have 'friends' like that?
You are still hypothyroid. Find an endocrinologist that will put you on T3 and T4 medication. NDT. 1or a little less is considered optimal range. No wonder you feel so bad. Find a doctor that knows what he/she is doing. That is just plain unprofessional and a malpractice suit waiting to happen. Find a good doctor that knows about hypo and hyperthyroid and not just "diabetes" which is what they know best.
Sorry to hear of your struggles. Many on this board are going through what you’ve been dealing with. My wife has suffered with Hashimoto’s for 20 years with countless changes in meds and docs. Here is a link to a doctor who has been doing groundbreaking research into this autoimmune disorder and has some amazing data. Hope this helps. Your levels, minus the ABOs, look ok. The problem is they are artificially normal due to the high levo you are on. It’s like using a hammer on a screw. This may have a dietary component. I would recommend a new diet, lowering your Levo to 125, adding in 20-25mcg of leo/day and maybe consider Weekly B-12 injections. While I’m not a doctor, and this info should be presented to your GP, I’m 10 weeks from becoming a PA and have had 20 years experience with this pathology. Whatever you do, always be on a prescribed regiment for a minimum of 6 weeks, checking the bloods, before making slow adjustments.
You need to find out what is causing your high TPO antibodies. You probably won't feel well until you get rid of them. Check out the book by Izabella Wentz (in the usual online places). You may have gut enteropathy.
In case nobody else has mentioned it, your ferritin is so low you should demand an iron infusion. Tablets will take months to have any effect and will make you constipated. If the NHS won't do it, find a functional doc who will.
I am so pleased that lots of folk on here have given you help and advice; it helps to know that other people not only understand what you are going through but also, care.
I can totally sympathise with how you felt by having your family 'treat you like a hypochondriac'; it really hurts that they think you could make your symptoms up or that you are exaggerating being unwell.
Having said that; I am, to my eternal shame, guilty of exactly the same thing. We all treated my mother in the same way because the GP's tested her and 'couldn't find anything wrong' - so there 'must not be anything wrong and it was all in her head'......
Try and get a copy of a book called 'Tears behind closed doors' by Dianna Holmes - the clue is in the title. She wrote the book because of how she was treated by family, friends and GP's because she 'looked so well'...….
Read it and you won't feel so alone or just plain crazy and then get your family to read it!
So TPO Ab means you have active autoimmune disease. Normal swings in Hashimotos can take you hypo or hyper in early stages of illness explaining why u sometimes felt hyper.
TSH is high, I have difficulty converting, and at risk of being trolled, Levothyroxine will work but you, if you are like me, need your TSH to be well below 1.
The food wellness then crash sounds like reactive hypoglycaemia, advise you seek a n Islet Cell Antibody test or just watch your HBA1c. I eat multiple small meals, stops the crash.
Ask for a referral to an endocrinologist rather than the diabetologist you are probably seeing at the moment.
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Finally T3 prescribed by my Endo
Switching back to Levothyroxine/Liothyronine from NP Thyroid - is it okay? (I miss my old self)
Latest endo visit - T4 and T3
Endo says I am a hypochondriac 
