I really feel like crying right now!! I have been on reduced meds for almost 3 weeks and have felt so horrible dragging myself around so I took myself off to the nurse and had a further blood test done. I asked the doctor who is new to me to call me today with the results. My Free T4 is down from 21.2 to 18.1 and my TSH has gone from 0.08 to 0.13. He said he thought I wasn't feeling well because my body needs to recalibrate with the reduced medication! Told me his aim was to get me down to 0.35 and that if I didn't stay on the lower dosage I would suffer a heart attack and broken hips because of the higher dosage...he said this about 6 times and I told him I felt he was bullying me into taking the lower dose. I suggested that it should be about how I am feeling rather than the blood test and he refused to accept that. He then said well its up to you if you want to increase your dose but its my duty to tell you you will have a heart attack and break bones if you do!!! Crying now...sorry but I feel so bloody frustrated! He then told me that they can't do blood test every week and suggested he was surprised they hadn't got their knuckles wrapped for doing me a second blood test!
Reply
Written by
MrsAitchbee
To view profiles and participate in discussions please or .
Thank you so much for your reply sickoffeelingsick I just feel so upset. Trouble is we have just moved here and its a very rural area with only one other docs surgery and this doc is supposed to be the best! No hope for me then x
Some of these doctors dont have a clue ive just ordered a book stop the thyroid madness and joined there face book page and this site for support as i felt at my wits end. The gp might be very good at other things but he clearly has no idea on thyroid problems . I felt the same a coupl of weeks ago with a junior dr at the hospital who looked about 12 and i thought ive had this illness longer than youve been alive so stop talking rubbish her answer sleeping pills !! I just walked out and threw the prescription in the bin. Dont let him get you down x
It's just not right we have all these problems. I truly don't think GP's are qualified to deal with our problems...they just don't understand and are given outdated guidelines to work on.
Mrs.Aitchbee, your doctor's talking out of his rear end and isn't keeping abreast of research. This study from 2010 says:
New research shows that it may be safe for patients taking thyroxine replacement to have low but not suppressed thyroid stimulating hormone (TSH) levels. The research shows for the first time that it may be safe for patients to take slightly higher doses of thyroxine than are currently recommended.
There's no point in doing blood tests every week but a test should be done 6/8 weeks after any increase or decrease in dose. Did he put you back on 100mcg or leave you on 75mcg?
Your GP sounds like a bully and a pig. I'd find another doctor if I were you.
Clutter is right I am now on t3 only, any gp will tell you that is 'dangerous' however my heart no longer flip flops misses a beat then goes bang as it has for the past thirteen years, so that must have been happening because I was still hypo.
It's absolutely no consolation when unwell, we come up against a brick wall and instead of reassuring us, he reduces medication. Pays no attention to the plea of the patient.
It is not recommended that you 'go it alone' but you are going alone anyway because the GP is horrendous. He tells 'tall stories' i.e. heart attacks, etc to frighten you. Instead you should tell him that heart problems are most probably due to being undermedicated or undiagnosed.
If he's the best, God help us. You can send him a copy of this study as he obviously hasn't looked at a research paper recently.
by joining this forum you will be more educated that the person who is supposed to be a 'doctor' whose obviously not up to date at all and below is an excerpt from above link. I would be tempted to send him a copy of each and make another appointment with another doctor:
The result is nearly universal undertreatment of only one kind of thyroid insufficiency--thyroid
gland failure. The fact that one cannot merely "normalize" the TSH is acknowledged in official guidelines that state that the TSH must be reduced to the low end if its range, and the statement of a top thyroidologist that the TSH often is suppressed when people are well-treated and there is no evidence that this is harmful as long as the FT3 is not high. But even this more aggressive T4 therapy is often not sufficient. There can be poor T4-to-T3 conversion with T4-only therapy. With TSH-normalizing T4 therapy, FT3 levels can remain relatively low (Escobar-Morreale 1996), and can even be lower than before the T4 therapy was started--leaving a patient more hypothyroid than before therapy! Yes, small doses of T4 reduce the person's TSH, which reduces both the thyroid gland's output of T4 and T3, and the body's tendency to convert T4 to T3! The physician, falsely believing he has restored thyroid sufficiency when he has "normalized the TSH, then ignores the patients' continuing symptoms, or blames their symptoms on some other cause (e.g. depression, fibromyalgia, etc.). This tragic error is repeated thousands of times daily in clinics across the world!
Hi there Clutter..Thank you so much for your reply...very informative, I have printed out the study for reference. I am just now so worried that I have damaged my heart as I did a few years ago get palpitations and went for testing and was told I had extra ectopic beats! I can get palpitations from time to time and always wondered if it was linked to my medication but was never told it could be. I just get concerned that GP's are allowed to play such a major part in our well being and really know nothing about our problems and are just guided by a blood test. He told me to stay on the 75mcg but of I can't cope to go back onto the 100mcg but he told me I can't say I he didn't warn me about getting a heart attack! I now feel lie a ticking time bomb!!
Mrs.A, Did you ever watch Lost in Space? Imagine your GP as the robot moving forwards and backwards in panic, oscillating his arms and hysterically yelling "Danger, Will Robinson" and "Warning".
If he honestly thought there was the slightest danger of an increase causing a heart attack he wouldn't have told you to go back on 100mcg if you couldn't cope on 75mcg. He's scared you good and proper but without cause IMO. I'd go back on 100mcg like a shot.
Ectopic beats, palpitations, heart racing and fast pulse are typical hypothyroid symptoms. They can be due to under medication and also over medication. Sometimes medication is spot on but they still happen My heart skipped beats, thumped and pounded so hard I could see a pulse throbbing from rib cage to belly button under my T-shirt but half a dozen ECGs and 24 hr ambulatory ECG were all 'normal' other than a slight arrhythmia detected probably causing what feels like missed beats but is just a prolonged gap between beats.
Thank you Shaws for all the info. I shall print it all out!! I really feel so alone now and am truly terrified I will get a heart attack...I am at the point of writing a letter to the surgery which isn't a great introduction as we have only just moved here but on my first appointment with him before my blood test I told him my hands were really cold and it is always an indicator that something wasn't right but he just told me it was more likely I was just cold because of the weather! Its not right we have such a struggle xx
If you truly read what Shaws sent you, link, Dr. Lowe, i would be more concerned about having a heart attack from the low dose your doctor has you on. Has he even checked your free t3 levels? Show him this!!! Actually, just find a new doctor. This one will leave you ill.
I was trying to research those claims but from what I could ascertain, it was a supposition that these effects could occur based on certain studies. That's not to say there is some validity...
You should also ask your GP for a time frame, I'm sure he will have no idea and I couldn't seem to find one. He's referring to atrial fibulation and osteoporosis as effects of prolonged high dosages.
I took some higher dosages due to a doctor's mess-up and I was so terrified as I had no experience or knowledge about the issue. I think it would need to be a very high dose to have an immediate dramatic effect like that - combined with existingweaknesses.
Also, the whole dosage system is a trial and error approach with increases or decreases depending on blood results - so, by his logic, he could be causing damage...
Keep researching and at least you're on this site. Some of the guys above could send you some links on studies.
Our local endo says that TSH is the most reliable test and therefore no test for T4 or T3 is necessary and they will not test them under any circumstances!!!
my gp said the same.TSH at 3.2 was "normal" and no need to test for the others
Report him. Arrogant little wimp! Get in touch with NHSEngland too many boffins getting away with treating people like there worthless. Self medicate and get this bum reported xxxx😈
Listen, don't put up with this rubbish from your GP. My thyroid stopped worked 37 years ago. I have heard it all from these doctors - please everybody excuse my language but the majority of them don't know an arse from an elbow. The TSH test is highly unreliable plus GPs these days are grossly overpaid idiots. I have been taking a mixture of T3 and T4 tablets now for over 5 years and have just moved house - the new GP had never heard of my tablets - sent me to see an endo - she looked down her nose and said I needed to stop the T3 tablets - then the new GP told me "your going to have a heart attack if you stay on those tablets". Listen to your body - it's your best friend and find another doctor.
That's awful! If I was you I would change your doctor. I did after my RAI treatment when it had started going the other way and got treated a lot better. I hope you feel better soon.
At least he has said it is up to you, mine wouldn't even do that so I am self medicating. Stop crying, telling him yes you'll take responsibility and have him prescribe you your old dose and in ten years time remind him you're not dead yet and haven't weak bones. I'm sure someone else will have pointed you toward the lack of research that substantiates that he his wrong. Ask him to point you to the research rather than the old nhs wives tales they keep telling. Good luck and hope u feel better soon on your old dose.
What a horrible little tyrant and bully this guy is. Can't believe he is considered to be 'the best'. I think it might be worth trying the other practise. Don't let him make you cry, he is just a bully. Your body 're calibrating'! Pah! Now you've found this site you'll get lots of good advice, get reading and find the evidence you need to back up your case.
The last time I came out of a consultation crying with frustration was when I was told 'I was needing a holiday' - I knew I felt really ill - doctor I saw obviously thought I was nuts. Three months later I was in a state of collapse and after seeing a different doctor on a Wednesday, had blood test the next day, the day after that I found a phone message telling me I was very hyper with antibodies and to collect a prescription to start treatment while I was waiting to see the endo - my GP had booked that as well. I had Graves disease!
So go by your own instinct, read up as much as you can both from books - I like Dr Anthony Toft's book, Thyroid Disorders because he is 'establishment' and if I can find evidence in there to back up what I want it's harder for doctors and endos to disagree with one of their own - then they're a loads of help on here and on the Internet generally where you can gather evidence to support your case, ditch the useless tyrant of a doctor and go on from there. When you have your next bloods done ask for B12, vitamin D, ferritin and folates too and try for T3 while they're at it although I've always had to get that done privately. (((( Hugs)))) loads of people have had an experience like yours and gone on ti sort themselves out, don't despair 😊
You really need your FT3 tested (which they almost certainly won't do) and your antibodies.
Dr. Anthony Toft, former Endocrinologist to the Queen, states that some people need their FT4 above range and their TSH suppressed Pulse magazine and The British Medical Association Family Doctor Guide to Thyroid Disorders. Mentioned on Thyroid UK. You can ask Louise for the reference.
Doctors like this are just little tin gods. Try to ignore him without confrontation. Tell him that you will see how you go on and then put yourself back up to the dose where you feel better. My blood test results (TSH) every year are "too low" for my doctor but I just ignore him and stay on the dose which suits me. We have to live with this condition not them.
Take care. Karen
Hey there hope you're feeling ok. Just wanted to say do what you feels best for you. Dont let them upset you , you have enough to cope with. My gp of 15 years told me to my face GPS didn't think hypothyroidism was a big deal. Horrible. So I sacked him.
People here are more helpful by far and more clued up.
all the best.
I have had a similar problem. I have sub clinical Hashimotos Thyroiditis. My TSH on natural thyroid was over 1.0 after a month's medication. However, about one month later, it plummeted to 0.20. My doctor phoned me in a tizz and warned me about cardiovascular disease and osteoporosis (Research is now showing that suppression of TSH is quite usual when on medication and that there is no risk to bones nor the heart from this. If you are in danger, you would be having Hyper, not Hypo symptoms). However (buying for time), I persuaded my doctor to send me for another test in a month's time. TSH has a distinct circadian rhythm. It is at its highest around 12.0am to 2.0am in the morning and reachest its lowest point late afternoon. This means that you should go for a fasting blood test as early as you can in the morning and postpone your medication until after the blood sample has been drawn. I used this information to bring my TSH into the 'Holy miracle if the infallible TSH' range. I live in New Zealand, where laboratories open as early as 7am. I arrived before the lab opened its doors and had my test at 7.05 am. The result: My TSH was then in range: 0.66. My doctor was relieved (how silly). The reference range at the laboratory I use is 0.40 - 4.0. I am not familiar with the situation in the UK. Can you shop around for Labs? Do you have Labs that open very early in the morning? Anyway, you should not go for your test in the afternoon, you should do a 12 hour fast before it and you should postpone your medication until after the test. You must not worry about your TSH being so low. Doctors with an ounce of sense, knowledge and experience should realise that clinical symptoms are far more important than ink blobs on a piece of paper. You are a patient, not a Lab Value!
My GP asked me over and over again if my family had a history of diabetes. I told him no but we do have hypothyroid and I want tested. He was so sure of himself that my tests would show I was diabetic but not a bit. Hypothyroid yes. Doctors don't know everything!
they all say this...taking too much thyroid medication will kill you and break your bones! B******s!
My GP stopped my T3 without notice because he said that I would damage my heart and my bones would become brittle. Also, I am not hypothyroid as my tsh tests were all normal. I was given a dexa scan - guess what - absolutely fine. I now have to buy my T3 and take 175mcg daily to stay well. If I'm not hypo. why am I not dead yet?
The stupid thing about any tests such as a dexa scan is that one cannot have a control. What would my bone density have been like at this age without medication? Impossible to tell, therefore one would not be able to attribute bone thinning to thyroid medication alone.
Get a decent GP or try a private one who knows something.
i know exactly how you feel.i live in a semi rural area so changing gps isn't an option,is there more than one gp at your surgery?they don't have any empathy for their patients.its like youre just a number.a gp came out to me a while ago (not my request-suggested by the receptionist)and all he said was take ibruprofen -even though he knows i have stomach issues and shouldn't take ibruprofen if thats the case.all my problems have been put down to IBS and constipation when i know i dont have either.i am guessing if you've moved to anew area you haven't made many friends yet?do you have friends or family near you ?
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.
My heart skipped beats, thumped and pounded so hard I could see a pulse throbbing from rib cage to belly button under my T-shirt but half a dozen ECGs and 24 hr ambulatory ECG were all 'normal' other than a slight arrhythmia detected probably causing what feels like missed beats but is just a prolonged gap between beats.
GP not happy about very low TSH (on NDT) - advice?
Confirming GP knows nothing
Could increasing Levothyroxine push me into hyperthyroidism
