Hi, I am new and I am fed up. I am fed up of feeling so unwell. I am fed up of my endo not caring about how I feel. I am fed up of having my dose changed about so many times.
I was diagnosed hypothyroid in 2012. It was a shock to say the least because I was the first in my family to be told I have it. My mum's diagnosis followed 3 years later. Family have a whole host of autoimmune and endocrine problems.
I want to get well, but I get the feeling I will never get that far since I felt almost back to normal on 200mcg Levothyroxine and 20mcg T3 back in June 2017. My focus was better, I was happier, more relaxed and now I am back to the miserable, fat, cold, tired, constipated, aching, pale person that I am now.
I have had it suggested that I am suffering from generalised anxiety disorder by my endo and I am considering accepting this diagnosis.
I feel like a complete hypochondriac with my symptoms and have no idea where to turn.
Thanks for reading.
Dec-2017
TSH 4.85 (0.2 - 4.2)
FT4 14.9 (12 - 22)
FT3 3.7 (3.1 - 6.8)
Written by
OliviaC1990
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It sounds very much as though you have autoimmune thyroiditis aka Hashimoto's. Have you had thyroid antibodies tested?
Don't accept a diagnosis of generalised anxiety disorder, your problem is very likely thyroid related and nutrient deficiencies. Have you had Vit D, B12, folate and ferritin tested?
And there is confirmation of Hashimoto's and the cause of a lot of your problems.
It beggars belief that these endos, so called specialists, have so little knowledge of the conditions they are supposed to be managing and monitoring for their patients. Unfortunately, most endos are diabetes specialists and know diddly squat about hypothyroidism but they like to pretend to, so when they don't understand the results or how to treat them they come up with ideas like the patient is non-compliant, overdosing on their meds, not taking their meds, or suffering from "generalised anxiety disorder" or depression. They all need shooting!
Hashi's is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results.
You will need to read, learn and help yourself because your ***** of an endo wont be helping you.
You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.
Hashi's and gut problems tend to go hand in hand and very often nutrient deficiencies are the result. Do you have any results for Vit D, B12, Folate and Ferritin? These need to be tested if not already done. Nutrients must be optimal for thyroid hormone to work. If you do have gut/absorption problems then they need addressing so that nutrients can be absorbed.
I wanted to prove to the endo I am a poor converter so I dropped the dose on advice of the GP and the GP thought it would stop the endo from intimidating me. Yes I have results of ferritin etc
Your GP seems to be quite supportive. Maybe you should just ditch the endo or ask for a referral to a different one. You can email Dionne at tukadmin@thyroidk.org for the list of thyroid friendly endos then ask on the forum for feedback for any you can get to.
Post all information to do with nutrients and supplements.
Reducing dose just shows that you are undermedicated. Poor conversion is demonstrated by low TSH, high FT4 and low FT3.
If you feel bullied and intimidated by your endo make a complaint about his/her behaviour to the head of endocrinology or the hospital PALS and asked to be assigned to a different endo.
Hi Olivia and welcome to the forum. Sorry you're feeling so fed up but it's understandable! Has anything changed between when you felt reasonably well and how you're feeling now? Was your dosage changed? Also, have you had thyroid antibodies tested for?
Anxiety and depression can definitely be thyroid related and, to me, your FT4 and FT3 look quite low in range, even though they are within range. I think they should be at least mid range, preferably in the upper quarter. And your TSH is actually fairly high. I've read on here that with treatment, it should be 1 or under.
I'm fairly new here and still learning, but you'll get some other replies too.
WHAT?! Good god, no wonder you're feeling rubbish and fed up! Reduced from 200 to 25?! Did they say why? And yes, you've got Hashimoto's. I've read that a gluten free diet can help to reduce antibodies. You poor thing, no wonder you're feeling so unhappy
I'm not an expert, but from what I know, it sounds like you weren't converting the T4 to T3 very well. And, if you were taking T3 too at the time, your FT3 level should perhaps have been a bit higher. Someone more knowledgeable will reply and give you fuller information. But I just wanted to comment and reassure you that you're not being a hypochondriac, and there are physiological reasons for why you're feeling so awful. Even though your FT4 was over the range, your FT3 wasn't even halfway through the range. And it's the Ft3 which is the active hormone. FT4 is only a storage hormone and has to be converted to Ft3.
Nasty pasty. A lot of people on here have awful experiences with their Endos. I'm sure there are some good ones out there too... but a lot of them don't seem to be thyroid experts, rather they are genned up on diabetes. Mine told me I was in danger of going hyperthyroid when my FT3 was low in range!
Do lots of reading on here - you will learn a lot. A lot of us self medicate, because it's becoming increasingly difficult to get T3 on the NHS, if at all.
There are some very knowledgeable people who post on here and you'll get some good information.
I'm blowing a huge wet raspberry of disgust at your endo for you!
You're welcome. Hang in there. It will get better!
I saw your reply below about dropping your T4 (perhaps not a great idea, but I understand why you did it). Did you know there is a genetic test called DIO2 which will tell you if you're able to convert T4 to T3? There are details about it on the Thyroid UK homepage.
I'm not aware of anyone who's been tested for it on the NHS, but it is available to buy privately. Not ideal. But some people have been able to use it to persuade their Endos to prescribe T3.
Was made to feel intimidated by the endo treating me
Yes the endo shouted at me
Did you have anyone accompany you to your appointments? If not then please do so in future. Doctors are far less likely to be bullying if there is a witness there.
Now, I am old and getting more cranky the more I hear about these bullying doctors. So here's a little tip for dealing with it next time.
Endo shouts at you.......
You reply...
"Listen Buster, I haven't come here to be shouted at by the likes of you. I am a human being, just like you. If you want me to be respectful to you then I demand the same respect back...."
Yes, OK, maybe not quite like that but this bullying by doctors has to stop somewhere. If you get shouted at, shout back. If the endo is rude, point this out and say you will report him/her if he ever speaks like that to you again.
He will accompany me to hospital but not the appointment, he refuses to come in with me. I tell him how unwell I feel and he doesn't really say very much
Not very supportive then is he? Doesn't sound as though he's particularly interested? Like I say, give them all that open letter to read. Print it off and give a copy to all of them. If they are still unsupportive I'd ditch the lot of them!
I feel annoyed!! I would like to do the job for you of putting your endos head right up his @rse as that is where he should wear it!! And your partner needs to support you and he let the endo shout at you-he should be supporting you through this but he sits there while another man shouts at you!!! My hubby supports me all the way and comes to appointments with me but last time waited for me as he knew i was not happy with endo and knew i had my boxing gloves on. Seasidesusie is right put them in their place it does not give them the right to verbally abuse you just because they have a title- i work with judges in the court system for many years and i have found them to be less arrogrant and less full of self importance than these jumped up endos. Good luck with your treatment you deserve support from the medical profession, partner and your family.xxx😊😊😊
Thanks for posting this site SeasideSusie . It is the most sensible letter about Hypothyroidism I have read. Not at all a 'poor me' letter, but just straightforward facts.
SeasideSusie above is fab with vitamins. Click onto her name and then click replies for lots of excellent info. It takes time to be well - so hang in there 😊
Definitely do not accept an anxiety diagnosis or believe you are a hypochondriac, docs are very useless pants people who know not much at all most the time - you are more likely to still be very physically ill.
You need to get all your vits tested asap. If docs won't do them, you can get them done privately at a reasonable cost. I expect you're deficient in these so please do come back with the results.
You are still very hypothyroid but you are on a very large dose of meds compared to the average needs which is why they'll be reluctant to up them. For example, I have no thyroid function left at all and only on 50mcg T4 and 30mcg T3. Do you have any stomach issues that would affect your absorption? T3 can be more easily absorbed than T4 so might be why you felt better for a while once you started the T3.
I used to be on a much higher dose as was resistant to them so only on T3 only and couldn't absorb them but was better after going on a gluten free diet - all my other autoimmune and endocrine stuff disappeared too although too late for my thyroid. Many of us are intolerant to gluten which can cause inflammation everywhere in your body so well worth a try especially with your family history but must be 100% gluten free including cross contamination and for at least 3-6 months to see if makes a difference to you.
I dropped it because the endo was paying no attention to my symptoms and was taking me off my T3. I wanted to prove to him that I needed the T3 so dropped my dose that would prove to him I'm a poor converter. Will post vitamin levels now
Okay, well this won't help you feel well to be honest, it can cause a heap load of problems that could take months to get back to normal or land you in hospital so think about this. It's unlikely to help as they only see what they want to see x
I personally wouldn't drop it that much to be honest. maybe 25mcg if I really felt I had to but that's a large decrease which could really shock your system
Such outrageous behaviour from a medical professional. Probably completely out of their depth, Diabetes specialist. No point seeing him again and really should be reported for bullying
But move on and get better
Read as much as possible about Hashimoto's. Very very few NHS medics understand it
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)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
your GP sounds supportive
Ask GP for coeliac blood test first
Also get vitamin D, folate, ferritin and B12
Persistent low vitamins with supplements suggests coeliac disease or gluten intolerance
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne:
tukadmin@thyroiduk.org
Also request the list of recommended thyroid specialists, some are T3 friendly
Professor Toft recent article saying, T3 may be necessary for many
I think you just need to be doing things in the right order. Your GP sounds onside and I think as you have gone back to 25 then you need to go back to first principles and increase to 50 and retest 6 weeks later and so on until you get a dose that is more suited to you. Also get your Vit D, B12, folate and ferritin tested and get SeasideSusie's advice for improving those. It can take time but without getting this stage tight then adding T3 will not be as effective and you may even find when vits etc are optimal, took me 5 months but that is dependant on your levels, that you won't need T3 or may be only a small amount. But work on your conversion first and that makes anything else easier. One taking T3 your can't rest for conversion issues as the results are read differently so another good reason for correcting things in the right order.
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