I recently saw an endocrinologist as my Dr thought it should be the best step . He had all information with my history of thyroiditis after surgery Also all my thyroid tests were put in an excel form for ease. He insisted in doing further tests which was ok to rule out other causes of my many symptoms The tests came back ok.
The endocrinologist went through the guidelines and it was the same old things be quoted no thought about my symptoms and how this is impacting my life and has been for many months . I was quite blunt etc saying guidelines are not mandatory etc etc I said many things including he was not in my shoes etc. He couldn’t even offer a way forward or advice.
This endocrinologist is based in the north east and on thyroid uk s list.
Seeing my Dr next week who will be probably taking the same line as endocrinologist.
What a waste of my time when medical practitioners look at numbers and not the patient and symptoms
I will probably try to link up with one of thyroid private drs on thyroid uk drs list.
My life is on painful hold and nobody seems to care.
I shall be doing a private blood test soon on the 21 st of March.
Sorry about the rant but at least people listen here.
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Badmintonteresas
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I understand your frustration .... but realistically it is probably best to wait a bit longer before seeing someone else (to see if your next blood test shows evidence of your TSH continuing to rise.)Once they have evidence of a clear trend of rising TSH getting close to / going over the upper TSH reference range they will be more prepared to consider offering Levo .. but unfortunately , whoever you see, their hands are a bit tied while your TSH is still in range.. and to be fair .. they will still want to to wait to make absolutely sure it isn't going to get better on it's own.
The problem with getting Treatment before TSH goes consistently over range is that in future , your diagnosis will always be doubted..... by you, and more importantly by the Doctors you will have to deal with to get your Levo dose correct. Even if you see a private doctor for your thyroid hormone prescription .. other doctors will always want to mess with it whenever you see them for 'anything else' ... keeping the right dose can be a constant battle even if you do have a 'solid' hypothyroidism diagnosis .. if you don't have a solid diagnosis, it can become a circular argument of "your problem is that you are overmedicated on a thyroid hormone replacement that you don't need" .
( as well as the obvious issue that once on Levo it's impossible to find out if it would have got better on it's own without coming off the Levo again.. which can lead to months of uncertainty while feeling unwell again .. and if you find Levo doesn't make you feel well after months of getting to the right dose ... it can be very hard to decide what to do at that point)
Thanks for the reply but my state has been going on since September 21 with more symptoms getting worse along the way. I am worried about the effect on my joints which I have had no trouble with previous to this problem My muscular skeletal system is being hit big time. Previously I was a very active person having played sport at a highish level( county veterans) all these activities are on hold and my husband is at his wits end . I understand your reasoning but how long do I have to carry on like this ?
Hopefully not much longer ...last TSH was 3.6ish (top of range about 4.2 ?)If i were you , i'd get it done again after 1 month... see if it's higher . MAKE SURE your test is early am. 8/9 am (TSH is highest middle of night, falling to lowest around 1-2 pm.)
It does seem to be going up quite fast ,so if you get one more result that show a clear upwards trend, you will have much more leverage at your next consultation.
Mine went up from 5.7 to 6.8 within 6 weeks when i was diagnosed ... so it isn't always a case of waiting for years .
On reading your post - the beginning reminded me of when I consulted with Dr Barry Peatfield (RIP) and the first thing he did was shake my hand - and that enabled him to make his first judgement about my condition.
Just like mothers/fathers who would put their hand on the the forehead of children's foreheads who weren't well.
'The majority of 'modern-day' endocrinologist/GPs are unaware of any clinical symptoms at all that affects the patients' health and understanding.
Numbers have replaced clinical symptoms. They forget we're blood and flesh -
Dr Gordon Skinner - also had the same training as Dr B and he saved many lives too. He, too, was also pursued and had to appear before the GMC - always found to be doing nothing wrong. But the worry/stress must have had some effect on his body.
Dr. Skinner also wrote a book that was helpful. He saved lives - this life in particular had publicity.
Another book that was written and the author went on to help Dr Skinner whose aim was to try to change the 'modern' method of diagnosing/treating patients.
On reading the following book I found it incredible/awful that the person had to go through so much discomfort for several years...:-
I will have to check with TUK tomorrow as I'm sure I was told Dr Barry Peatfield had died. I consulted with him and he hasn't been mentioned on this forum for a very long time as someone who'd consult.
He had resigned his licence because he was being pursued by the 'authorities' so that he could still consult with patients even if he couldn't prescribe but I will ask TUK tomorrow if they can confirm or not.
I consulted with him after he had resigned his Licence due to being pursued as if a criminal, just like Dr Skinner's experience. That was some years ago.
I also consulted with Dr Skinner. I know for certain that Dr. Skinner died at his work.
I believe Barry is still alive although elderly and in poor health.
Dr Skinner was a virologist who noticed many patients with CFS/ME had signs and symptoms of hypothyroidism and responded to thyroid hormone therapy. He did not have 'the same training as Dr B', i.e. he didn't do the Broda Barnes training. He did diagnose on the basis of signs and symptoms along with response to thyroid hormone therapy.
so sorry that Barry Peatfield has died. I saw him twice and such a helpful and lovely man. I am seeing endocrinoligist today at Poole hospital where initially precribed liothyrinine 10 years ago . it has threatened to be stopped. my gp had letter from Worthing hospital (where i lived for short time) saying it should be stopped as dangerous for heart and bones. Gp has forwarded it on to endocrinologist so i am dreading this appointment.
In May 2001 Durrant-Peatfield was called before an Interim Orders Committee and subsequently suspended from practising medicine in the United Kingdom for 18 months for offering what the General Medical Council (GMC) described as "controversial treatments" for Chronic fatigue syndrome and fibromyalgia patients ."
Why are some medical personnel stupid and unknowledgeable about T3. The threat of the 'experts' who state:-
"it should be stopped as dangerous for heart and bones"
If mother-nature (before we are hypothyroid) supplies T3 and T4 how on on earth would both cause heart problems. The "lack of both" would do so definitely but not if we have 'optimum dose' replacement each day.
It is the lack of T3 that is more likely to cause us to feel unwell as we need an optimum (what suits the patients) dose and our brain and heart contain the most T3 receptor cells and they are all over our bodies.
Excerpt:-
Every cell in the body depends upon thyroid hormones for regulation of their metabolism. The normal thyroid gland produces about 80% T4 and about 20% T3, however, T3 possesses about four times the hormone "strength" as T4./hypothalamus secretes TRH, Pituitary secretes TSH, Thyroid secretes T3 and T4.
The thyroid gland is under the control of the pituitary gland, a small gland the size of a peanut at the base of the brain (shown here in orange). When the level of thyroid hormones (T3 & T4) drops too low, the pituitary gland produces Thyroid Stimulating Hormone (TSH) which stimulates the thyroid gland to produce more hormones. Under the influence of TSH, the thyroid will manufacture and secrete T3 and T4 thereby raising their blood levels.
The pituitary senses this and responds by decreasing its TSH production. One can imagine the thyroid gland as a furnace and the pituitary gland as the thermostat.
Thyroid hormones are like heat. When the heat gets back to the thermostat, it turns the thermostat off. As the room cools (the thyroid hormone levels drop), the thermostat turns back on (TSH increases) and the furnace produces more heat (thyroid hormones).
The pituitary gland itself is regulated by another gland, known as the hypothalamus (shown in the picture above in light blue). The hypothalamus is part of the brain and produces TSH Releasing Hormone (TRH) which tells the pituitary gland to stimulate the thyroid gland (release TSH). One might imagine the hypothalamus as the person who regulates the thermostat since it tells the pituitary gland at what level the thyroid should be set.
Good news. Saw the registrar endocrinologist and said it is not being stopped. It is the GP surgeries who want to stop it. He gave me a tip. Take dose on empty stomach and do not eat or drink for minimum of 3 hours. I did not know this . I thought only an hour. I am so relieved that they are not stopping
It is a heavy weight lifted from your shoulders. I am glad the Registrar Endo reassured you that your T3 will not be stopped.
The main difference between a career and a job is that a job is just something you do for money, whereas a career is a long-term endeavour usually helping others,
I have been having the same outcome for 15 years… and now they have discovered that I have an enlarged pituitary gland. I wrote to Dr Chris Steel on this morning every day for a month until he replies saying that if I was his patient he would treat me for under active thyroid because I all the symptoms and see how I got on.. too many go by the numbers which don’t always add up.Good luck 🤞🏼
So sorry about your experience with the Endo. So disappointing. I am in the North East do you think you could PM me which person you saw, so I can avoid them, as have been considering seeing an Endo re T3 Rx. Although that said, I hear such detrimental things about their lack of knowldege I wonder whether it’s worth the upset. I do hope you manage to find a route to being more well. The people on this forum are so knowledgeable and helpful. Take care🥰
Hi thank you for your enquiry The endo in question is on the list for Durham Nice enough man but guidelines etc etc no thought about my symptoms of pain in joints and muscles. I didn’t have to pay directly as I have a low form of health insurance which is on his list I am considering going with a private dr on the list I can’t live like this anymore!!!!
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