Hi everyone thanks for letting me join I've had hypothyroidism since 1993 after my GP kept telling me I was fat and needed to go on a diet! Even though I had put on 2 stone in 2 months on 600 calories a day. My brother had hyperthyroidism and before diagnosis he had what we called a moon face and bulging eyes.
One day I looked in the mirror and saw the same thing. I told my GP I wanted a thyroid test and why. So I had the blood test and later that day had a call from the hospital to go there immediately.My thyroid was so dangerously low I was in danger of going into a coma
The Consultant told me to always go by how i felt not by the numbers but it is so difficult to get the GPs to understand that and keep reducing my. thyroxine when my T4 goes up.
The last time, even after 30 years of this they still would not let it go and reduced it again.
I asked for a referral to an Endocrinologist, no appointments available. So I phoned his Secretary with my results and asked for help. He phoned me back and I saw him next day. He to!d me that GPs are forever doing this. I still had hypothyroidism and he gave me enough tablets to put it back up and told my Doc to do the same. But I also came away with another diagnosis of hyperparathyroidism.!
Now I have just been told again by my GP they have reduced my meds because my T4 was high.
After i got a copy of my results it was out of normal by 0.7! although many other blood result were more abnormal, one by double what it should be she ignored that and just changed my thyroid meds without even consulting me.
Does anyone else have this trouble? Why don't the listen to us?
Sorry for the rant!
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irishacres
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Saying your thyroid was low is confusing, I'm afraid. I'm guessing that you take Levothyroxine? How much do you take, and what were the results of your last Thyroid Function Test? If you could post them with the reference ranges it would be helpful. Ideally the lab would have tested TSH, Free T4 and Free T3.
In hypothyroidism (underactive thyroid) the usual presentation in blood tests is :
TSH is high
Free T4 is low
Free T3 is low
In hyperthyroidism (overactive thyroid) the usual presentation in blood tests is :
TSH is low
Free T4 is high
Free T3 is high
...
Sometimes doctors and/or patients refer to having "low thyroid" and they are talking about having low TSH. Other times they are talking about having low Free T4 and low Free T3. And depending on which one is low makes a huge difference to the diagnosis.
Also note that bulging eyes and moon face can occur with both overactive and underactive thyroid, although moon face is most common with hypothyroidism, and bulging eyes is most common with hyperthyroidism.
...
TSH (Thyroid Stimulating Hormone) is produced by the pituitary. Doctors appear to be taught that the pituitary is always a perfect organ that always produces the perfect amount of TSH. This, naturally, is a complete load of rubbish. Nothing about the human body can be guaranteed to be perfect.
If TSH was perfect then it would stimulate the thyroid to produce all the Thyroxine (aka T4) that your body needs, and about 20% of your body's requirement of T3. The remaining T3 required is made in other organs of the body by converting T4 to T3.
T4 is a storage hormone, required to make T3. T3 is the active hormone required by every cell in the human body, and it is the best indicator of "wellness" for many of us. When it is too low we feel hypothyroid, and when it is too high we feel hyperthyroid. But doctors rarely even test T3!
If someone has a malfunctioning thyroid and low levels of T4 and T3 they have Primary Hypothyroidism.
If someone has a low level of TSH and low levels of T4 and T3 it means that the pituitary is failing to stimulate the thyroid sufficiently for good health, and they have Central Hypothyroidism.
But doctors have been taught that low TSH is indicative of hyperthyroidism or over medication of hypothyroidism. However in the case of Central Hypothyroidism they cannot rely on TSH to monitor your condition. Unless your doctor(s) learn that they will keep reducing your medication inappropriately and will keep you ill.
And doctors have also been taught to fear hyperthyroidism, so getting it through their heads that low TSH in a hypothyroid patient isn't always caused by over-medication is essential but very, very difficult!
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I know very little about hyperparathyroidism, so can't make any comment on that.
Essential to get vitamin D, folate, B12 and ferritin levels tested at least once a year too
Are you in U.K. or Ireland
Presumably your hypothyroidism is autoimmune as your brother also has thyroid issues
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
My TSH is <001 always has been for 30 years but they reduced my thyroid from 175 to 150 because of this. My T4 was 22.7 which is only 0.7 over, my T3 was 3.6 low/normal.The last time this happened my Endocrinologist told my doctor to accept high to normal T4 (at that time 27.1) and my T3 as low to normal (at that time 4.6) Both of which were higher than now. But still they reduced to 150mcg. I have a lot of auto immune disorders and take vitamin D 800 daily and B12 injections every 3 months. I also have CKD and my creatinine is high and my folate low but they have done nothing about those
The main issue here is that your high FT4 and low FT3 are indicative of a problem your body has with converting FT4 to FT3
In a vain attempt to increase my FT3 my Endo kept increasing Levo until I was on 200 mcg a day. This achieved nothing at all except a feeling of overmedication which caused the symptoms of being hyperthyroidism.
Until T3 is introduced into your meds regimen this problem won’t resolve.
If you got T3 (liothyronine) prescribed alongside, slightly reduced dose levothyroxine you are likely to see kidney function improve
ESSENTIAL to test vitamin D, folate and ferritin at least annually
800iu vitamin D very unlikely high enough dose
Down to us to self supplement to bring vitamin levels to GOOD levels
Aiming for Vitamin D at least over 80nmol and between 100-125nmol maybe better
Low Folate
As you have B12 injections it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.
This can help keep all B vitamins in balance and will help improve B12 levels too
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)
This can help keep all B vitamins in balance and will help improve B12 levels too
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
I wouldn’t take any advice from a GP regarding changing your dose. Your Endocrinologist is the person that should understand dosing best based on your blood results and symptoms. My GP messed about with my dosing in the past and caused me significantly harm.
Hi, My personal opinion is you're placing too much reliance on endos. From my experience of having been hypo for more than thirty years, I have yet to find an endo that knows anything at all about hypothyroidism. I can't go as far as saying they don't exist but I have yet to find one! Three years ago, I saw a NHS endo at my local hospital after waiting seven months only to be told, "Your problems are outside my field". He was clearly a diabetes expert who knew nothing about the thyroid. I admired his honesty, but it didn't help. He then told me that there were no endo's at that hospital that knew anything about the thyroid!! When we're referred to an endo on the nhs, it's almost always a diabetes specialists that we see. You can not request a specific endo, even if one exists at your local hospital. I then paid to see an endo privately. He had all the right qualifications and experience listed on his bio. He made me really ill, by telling me I needed to take HRT, even though I was many years post menopause. He didn't monitor me at all. He did not tell me that this was designed to block my thyroid meds! My T3 was above range but I still had lots of hypo symptoms - hair loss, weight gain etc etc. All he saw was T3 above range. I became really ill, really quickly and this lead to disastrous consequences. I have since been diagnosed as being resistant to thyroid meds, which explains me having many hypo symptoms inspite of having a high T3. I am now prescribed liquid levo. This has helped enormously. I've reduced lio by 25%. I still have the problem but am much better. I've found it's better to educate yourself on what you need.
Oh my goodness that's shocking! I must admit I was confused that I had to contact the diabetes team. I was very lucky that I asked to be referred to an Endo when they reduced my meds because my TSH was and still is <0.01 but the wait time was ridiculous. So I called the hospital and asked to speak to an Endo secretary. I gave her my numbers and explained how bad I felt. I had a call from the Endo the same day and he told me to go to emergency care next morning at 9am.I couldn't believe it. Next day he did bloods then he came into the room and said
"You are quite right you are still hypothyroid despite the numbers I will give you some levothyroxine to take home and will get in touch with your doctor and tell them to increase it". It took all of five minutes. He was brilliant and explained everything and asked if I had any questions. He also said general practitioners are not qualified to change my meds as they didn't have the expertise. He got that right!
He saw me 3 months later to check on me. Unfortunately, like all good Consultants, he moved on. Since then I have had one phone call from the new Consultant in 2 years.
I phoned the surgery this morning for a call back from a doctor, only to be called back by a nurse who said she would ask the doctor!
So, I phoned the Endo Secretary only to be told he was on holiday but she would try and find someone else. I'm still waiting! So it looks like I got very lucky once and now I have to wait.
I'm glad you finally got it sorted. You are quite right that you have to educate yourself. My previous GP didn't read my notes that I had a stroke in my 30s and I was not to be given HRT. She decided to give me HRT but did not tell me, which in turn caused breast cancer. The same thing happened to my sister.
What is HPT? calcium has dropped a lot from 2.7 to 2.48 it's never been this low. vitamin D was 90 PTH 8.71 up from 6.71. 24 hour urine test was ok but not done for 2 years
I don't know the Endo who told me I had it has now left and I only get phone calls now. They have just said I will now only test every 6 months unless the adjusted calcium level reach 2.8 when they will have to operate. It's 2.65 now
I could be reading my own experience here. I’ve not been diagnosed with hyperparathoidism though. I’m hypothyroid and often get blood results with low TSH, low fT4 and low ft3 but because GP are fixated on TSH they reduce my levothyroxine. My endo wrote a letter to GP to say dose by weight 1.6mcg per kilogram of my weight. That gives me enough to drag me out of bed. I still have bradycardia (low heart rate) but apparently GP says it’s because I’m fit. 42bpm at 63 really!! I refuse to let GP reduce it anymore. My sister was treated the same as you on 1970s told she was fat and lazy until she did go into a coma. In hospital for 3 weeks. They constantly messed with her doses it makes me so angry even now. Keep educating GP , good luck 🤞
The doctor that told me I was fat didn't listen when I asked her to explain why my hair was falling out and I was falling asleep in the day (my children who were only little kept saying "Mum you went to sleep again") and I couldn't even lift my arm to brush my teeth as everything ached. I went from normal weight and super fit me put on 2 stone in 2 months! Amazingly she said she had noticed lots of people with my symptoms diagnosed with hypothyroidism, of course this was after I told her what was wrong with me!
Sorry to hear this and welcome! There are SO many helpful people here.
I’ve been on the forum a while and am staggered by how many people experience this from the GP. Often no consultation
it sounds like you know what is right though so stick to your guns.
I’ve avoided this by not having my thyroid tests at the doctors, I do them privately for about £32 (monitor my health) it’s an NHS lab and my GP accepts those results (not all do).
I would write a letter to the Practice Manager explaining that your GP is going against the advice of your Endocrinologist. Doctors should not mess with the dosage that an Endo has prescribed. Also, if you said no to a thyroid test, they are breaking the law by doing so. It is your right to refuse any blood test you do not want and they should honour that decision.
THANK YOU! Brilliant advice, I've just called my practice and told them what you said. Result!!!!!! They have reinstated my original dose and are sending the test results to my Endocrinologist. I can't tell you how happy I am. Bless you!
If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with themand their families and carers or guardian. "
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
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Total Confusion Over Thyroid Problems/Thyroxine!
Totally confused by results & symptoms- please help
Confused Newbie
Help totally confused 
