Some of you will remember my recent post about my private blood test results and a scan which showed I have a very small thyroid.........
Test results shown above, all vits and mins were ok.
On advice from some of you knowledagable people, I increased my Levo by 25mg and informed my Gp and endocrinologist I had done so, it was agreeded by both parties. They had little choice in the matter, I had already increased my dose.
I would appreciate your comments on my endo's reply letter to myself and Gp............
At her ( her that's me ) last clinic visit the thyroid blood tests were reasurring, I do not the blood tests you sent through do show a a free T4 that is slightly low.
As you will be aware this is only part of the pictureas you are also taking liothyronine (T3) in addidition to levothyroxine (T4) and it is the action of these hormones in combination that we need to account.
I am sorry to hear that you have not been feeling so well and the elevated CRP would certainly suggest a degree of underlying inflammation. The small thyroid gland would be consistent with the ongoing thyroid replacement.
I will be seen in clinic on the 4th of next month and would like as much info as poss before I attend. I have been unwell for a very long time and the endo despite his input of being sorry to hear this in his letter seems to do little to resolve my plight.
My private bloods were taken early more on an empty stomach and before taking any meds, where as when seen in clinic my bloods are drawn mid afternoon !
I appreciate your views so thanks in advance.
Written by
Jillymo
To view profiles and participate in discussions please or .
Doing the test in the afternoon would only really affect the TSH. And yours is high for someone taking T3. Both your FT3 and FT4 are much too low, so not surprising you have symptoms!
it is the action of these hormones in combination that we need to account.
I have no idea what he means here. lol I swear they have a little reference books of ready-made responses that will mean nothing, baffle the patient, but make them look clever.
The small thyroid gland would be consistent with the ongoing thyroid replacement.
The small thyroid would be consistent with having Ord's. Do you have high antibodies?
I will ask him when I next see him what he means about the action of the hormones ? Because my hoars sure are moaning ! Without the messing about I think you are probably right and if the truth known he hasn't a clue what he is on about. 🤓 Lets put it down to nerd syndrome.
I think he is more of a liver and diabetes consultant than thyroid. What is Ords ? 🤔 I think I explained, I were hyper then went to hypo and had a goiter ( I am going back to 1975ish ). The goiter has gone togeter what is now left of my thyroid. I have always had the high antibodies and suffer various autoimmune conditions.
I have hypoparathyroidism yet he pays little or no attention to that despite my telling him my vit D is too low ! I adjust that myself by taking extra D3 when needed.
My head only absorbs what it's interested in. And as I'm interested in staying alive, I had to learn all this to save myself from ignorant doctors! But I'm still far from knowing all about it.
63.2 is high but not all that high for antibodies. However, the number is not at all important. All you need to know is if they're positive or negative. And yours are positive so you have Autoimmune Thyroiditis - aka Hashi's. Ord's, basically, is Hashi's without the goitre. But you say you had a goitre, so I don't know. Doesn't make any difference to the treatment, though.
Most endos are diabetes specialists. It's very rare to find one that is a thyroid specialist. And even when they claim to be, they don't seem to know much about it.
I had RAI thyroid ablation back in 2005 - and became much more ill some years later:
I pursued a lip biopsy due to the insistence of my dentist but it came back negative for Sjorgrens in around 2016 and with no answers forthcoming from the hospital medical mainstream believe my issues that of RAI long term health issues :
I was dosed and monitored to keep the TSH in the range and on T4 only for some 10 years though with my health going in an ever decreasing circle of wellness -
I found this forum in around 2016 and having been refused both T3 and NDT in late 2017 started self medicating and am much improved looking after myself, and fortunately I have no other issues and so haven't seen a doctor since 2017.
It is essential that you are dosed and monitored on your Free T3 and Free T4 readings - as the TSH feeback loop on which the TSH relies on working well - is now damaged - and your Hypothalamic - Pituitary - Thyroid circuit loop now broken - as your automatic feedback loop has been ' disabled ' - with your thyroid non productive - as it has been burnt out in situ by the RAI.
Were you originally diagnosed with Grave Disease and the reason for the ' hyper ' episode or the RAI suggested to reduce the goitre ?
Either way I deeply regret drinking this toxic substance and we now have some research that may well be of interest to you :-
Interesting reading, were you treated with carbimazole in the early stages of your diagnosis ? The wretched things made me so ill I could barely stand. My endocrinologist of that time wasn't the most understanding and couldbe a bit of a bully where women were concerned. I would come out of the consulting room in floods of tears. What a journey so many of us have had.
Yes but I was very well on the Carbimazole but told at my very first hospital appointment that it was too dangerous a drug to stay on long term and that I was to have RAI thyroid ablation the following year for Graves Disease.
The BT Foundation leaflet was given me - and that was that - and still these leaflets are economical with the truth. and quite why this ' therapy ' is still encouraged in what we understand to be a health care setting - totally beyond my understanding.
Yes, I know what you mean about spending too many years in specialists waiting rooms! I used to go from specialist to specialst - any specialist I could find! - to try and get to the root of the problem. Never did. And, as you say, most of them were pretty useless. Didn't seem to know much about basic anatomy, let alone anything else.
I've seen four endos, I think. They were utterly useless!
Why were you given RAI? That's not usual for Hashi's. Or was it something else? But, whatever it was for, that would explain the small thyroid! 🤣🤣🤣
I was just reading your story on your profile, seem's you followed in my foot steps or the other way around. It makes me angry, all those years spent on a wild goose chase, it's no wonder your a greygoose.
I had always been rather lathargic from a young age, when I reached puberty things became worse. I would swell up so much so I would have to change clothes during the day or loosen trousers by using a nappy pin. I were refered to St Marys In London to see a right pig of a man, you will relate to this, I were told I were over wieght. Now it might be wieght now but it most certainly was not in those days.
I saw red and threw my notes at him and said 'it might be prudent for him to read them,' and from now on I have no intention of seeing the brass monkey I want to see the top dog. It was he who had my neck scanned ect and diagnosed me with a thyroid issue. I were hyper with a small goiter, I seem to remember seeing graves on the paperwork. If honest I cant say I know why I were given the iodine.
I was swelling up and down like a damned yo yo, they thought I had something 'very rare' and were going to admit me for a week, measure me and only feed me liquids. Unfortunately they lost the beds used for such studies and I never found out what it was they suspected !
I was then sent to the second arrogant ( I am going to speak chinese ) asshole and it was he i took to trbunal and won my case. He was made to put an apology and covering note in my records, ho boy did that feel good. High five greygoose. ✋
I had a scan of my Thyroid by a Consultant Radiologist who told me my Thyroid was very small. He also confirmed that it was a typical look of a Hashimotos thyroid, where it also looked inflamed. I only found out last year my Thyroid disease is actually Hashimotos (Ord's) and Endocrinologist confirmed I had Hashimotos Thyroiditis.
I do hope you get this sorted soon. Everything is an ongoing battle!!
I have a clinic appt on the 4th of next month and will be able to battle it out face to face. 🤺
Years ago they would examine your thyroid whilst you swallowed a drop of water, but not anymore ! My Consultant wasn't even aware I had thyroid antibodies until I mentioned, surely all this should be on my notes ? As you say it's a constant battle.
I am ready to try and take him on. I have already suffered heart failure and feel they should be keeping a better eye on me to make sure there is no extra strain on my heart. I see you have a Mitral Valve issue where as I have an enlarged Aorta - Oh joy arent we lucky? 🍀
Your Consultant is like my previous GP, when I told him I privately tested positive for Thyroid Antibodies and had Autoimmune Thyroid disease, his reply was, nearly everyone with Thyroid disease has them and changed subject. He is partly correct, a lot of people probably do and a lot don't. If the NHS were to test you for them then perhaps we might know sooner but I feel their attitude is what difference does it make its all the same problem with or without antibodies.
I'm no medic but all I know is if you have Autoimmune version of anything you are more likely to get flare ups when your system goes into overdrive. This is what happened to me. I don't think doctors are trained too much on Autoimmune conditions which is why we get ignored. Not good enough for me.
You are right, they should be keeping a better eye on you, you do have various conditions that need monitoring but alas this is where we are at. When you try to take control of your own health you get shut down as the NHS don't always like it. Someone tell me what we are all supposed to do!!!!
I only found out about valve leak after going to private Cardio to do with fast heart rate which actually related to my Thyroid. Just as well I did, my GP at the time wasn't interested in me being in A&E. I am monitored 2 yearly next echo Jan 2025.
Anyway, good luck for the 4th, no doubt you will provide an update on here soon.
I'm a heart here, a thyroid there, sticky blood elswhere ect but no bugger joins the damned dots or looks at the whole picture. My thyroid was being seriously over medicated which I believe to have caused the heart failure.
Out of panic my Levo was reduced by 100mcg which was not done in stages. My body went into overdrive with such a drastic reduction and now I am at the other end of the scale ! No wonder I feel so unwell.
Any idiot with any sense would look at my autoimmune history and put two and two together.
You have hit the nail right on the head, so to speak. No one is able to join up the dots, there is no co-ordination whatsoever, hence not getting treated properly.
Amazing you were over medicated, normally its the other way round. To be honest I am not sure any of them really know what they are doing these days, its quite frightening.
It is hard for me to say if the RAI made things worse as I had other issues going on. I didn't drink it, it was brought up in a special box and injected.
As for the Sjogrens lip biopsie it is often false negative ! What so many Drs fail to recognise is that our antibodies wax and wain.
Well done you for taking matters into your own hands and self medicating, many on this site have done the same. I have been afraid to do so because I have so many other ailments to contend with. I was just reading greygoose's profile which shows she has had years of suffering too.
I seem to remember Graves being mentioned. I was much happier being hyper because I lost a lot of wieght ! ! ! But now I am blown up and look like a mitchelin x man. I have always carried a lot of fluid.
I trust this site more than my Gp and consultant. It was here I first learnt about my diagnosis of hypoparathyroidism. In my ignorance I thought it was to do with my thyroid. I wasn't aware that we have parathyroid glands !
I will go and read your threads and try and educate myself, no chance of that. 😂
I know now I have been undiagnosed hypothyroid since a child - left-handed and undiagnosed dyslexia, urticaria, and hair loss by the time of the 11 plus - which of course I failed - since I seemed to be the only one who knew I couldn't read the questions - as I worked best with verbal instructions and my course work beyond reproach -
Graves has both Blocking and Stimulating antibodies - so you can be either hypo or hyper - though hyper the most widely written about as hyper Graves can by life threatening if not medicated -
there is no cure as Graves is an auto immune disease - so the solution is a take an AT drug such as Carbimazole - which simply allows you to ' buy yourself time ' while you wait for your immune system response to calm down again.
I had been to the doctors regarding my health a couple on times but my thyroid never checked further than the TSH and presume for Graves hypo the TSH never rises high enough to be seen as a cause of concern and of course the antibodies not run.
I only got diagnosed age 56 when I went to a doctor as I had been dealing with insomnia for 3 months and couldn't shake it off - and of course the total exhaustion, and weight issues, I'd put up with for years - tests were run - and Graves diagnosed - much to the doctors surprise - but I did have that fine tremor on my middle finger.
Looking back - I had been physically threatened and verbally abused 3 months earlier by a man I employed as my assistant manager and so guess the shock of this unprovoked attacked triggered my immune system to go into overdrive again.
I was well on the AT drug - the insomnia resolved and I thought I was sorted -
I had a period of hyperthyroidism while on the Carbimazole about 8 months in - as I ate for England, lost weight and had masses of energy - but it was short lived as RAI was booked in for a few months time - and as I had no understanding of what was going on I simply trusted the NHS and followed the mainstream medical suggestions.
After RAI I was placed on 100 mcg T4 and felt pretty much how I had all my life - and now identified as hypothyroid !! The RAI caused Thyroid Eye Disease and then some 8 years later my saliva started to dry up and this became an ongoing issue with my dentist suggesting I needed hospital support - but once I was found negative for Sjogrens I was simply discharged and no one wanted to explain or offer any form of pain relief - which was considerable.
I believe the RAI was expelled from my thyroid and damaged the whole of my digestive track from a total lack of saliva down through my stomach to my bowel - as I discovered when I collapsed during a colonoscopy and after aborting an endoscopy procedure - both of which I had been able to tolerate years earlier without any problem.
Now I'm self medicating with enough T3 circulating that my dyslexia is not the challenge it used to be - though when tired it becomes more difficult to read and comprehend anything !!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Further advice, please! 
Further advice needed please re TSH and T4 levels
Advice from you fine people, on increasing my meds please!
Further T3/T4 Guidance Needed Please
Your thoughts please lovely people
