Hi everyone. I have had an interactive thyroid for 22 years. Had been on 275-250 for many years. The dr's at my new health centre continue to reduce my daily dose, now 150. Blood test in July was 3 weeks after a contraceptive injection to stop heavy periods. Could this injection give a false reading of my thyroid blood check?
I'm completely exhausted that I can hardly function physically or mentally. Brain fog is like trying to wade through thick treacle. Hair loss, intolerance to cold, lack of energy, poor memory & difficulty with concentration, hair loss - a zombie most days. This is debilitating now & effecting my life & my work (self-employed). I've told them all my symptoms but they're not listening to me, only relying on the tests. They've also stopped my vitamin D prescription with no bloods or discussion.
Please advise. I'm desperate.
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TeaLoaf
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Do you have a copy of your results? If you don’t, ask your gp for them which you are legally entitled to, then post them on here. There will be others who will come along and give you some fantastic advice.
*Sigh* The phrase "normal range" has been used to keep thousands, perhaps tens or even hundreds of thousands of folks sick. In the range is just not good enough. You need to have your Frees (Free T3 and Free T4) at least half way through the range. Insist on being given the actual results and the range for these. If all your doctor tested was TSH, shame on him, because the results of the Frees are needed to determine whether your medication is sufficient. You can get private testing done. Check the ThyroidUK web site.
I've had a look, but can't find anything that indicates this injection can effect thyroid function tests. (except that it does reduce estrogen by enough to have an effect on bone density hence they don't like to let you have it for many years)
Estrogen does have an interaction with thyroid hormone receptors, so if i've understood correctly, lowered estrogen can have the effect of making the same dose of Levo be more effective, and could in theory lead to needing to take slightly less levo. And this would show in blood results. However i have no idea if this reduction in estrogen is more than with any other form of progesterone contraceptive pill, or whether it is large enough to have any effect in practice.
I can't find anything on whether the fact that 3 mths dose is administered all in one go would have more of an effect in the weeks shortly following the injection.
When i had Depo injections i had not been diagnosed hypo , so not on Levo. But in hindsight my thyroid was already struggling and the Depo had a really bad effect on my temper, to the point of being explosive!
Have you had essential vitamin levels checked? Low ferritin or Iron can cause heavy periods, exhaustion and other symptoms you describe. You may need to monitor your own vitamin levels if NHS is not doing them.
VitD is not expensive to buy. Doctors often prescribe too little to make a difference. Dosing is based on your result. VitD is fat soluble so a gel capsule containing olive oil or similar would be good. Amazon is one source.
Also when taking VitD it would be good to take Magnesium and VitK2-MK7 as they are important co-factors.
I posted an article here a couple of days ago - all about VitD research - did you see it ?
Could you request another set of blood tests for TSH, T4, T3, cortisol, B12, ferritin, Vit D and folate. If your GP won’t do these then you can get them all done privately. Thyroid UK promote getting private tests with Medichecks, blue horizon and Regenerus Laboratories.
To me it sounds like you are under medicated and/or not converting Levothyroxine to active T3. This happens to many people who struggle on Levothyroxine alone. What medication are you taking.
Call the surgery on Monday and request to see your NHS file on line via Patient Access. You can then check your results whenever you want to on your phone. I do this and find it much better than waiting for receptionists to print stuff off etc.
I asked for all blood tests. Dr said no, only thyroid. When asked what my last result was, I was told "in normal range". Because I can't concentrate & feel so exhausted, I couldn't justify or back up my asking. Dr informed me my symptoms are to do with menopause. How he can say this without testing, without seeing me, beats me! I think he's assuming.
If you can you should go private. Get a referral letter from your GP and check out Thyroid UK T3 friendly Endo in your area. Or get your bloods done privately then repost on here for further help.
If you get really bad take yourself to A& E.
You have described my own situation almost exactly; it’s quite astounding how NHS protocol overrides a person’s well being and quality of life.
I agree with that ... I sat infront of my GP with a balding head and my nails lifting off their beds and my GP refused to help me. He told me he would be stuck off if he gave me any treatment because my TSH was within NHS guidelines. These guidelines need to be changed in my opinion and until they are people with thyroid disease will not be helped. I have been offered antidepressants and counseling when all I needed was my doctor to write me a prescription for Levo. It is not as if this is an expensive drug and you can buy it online easily.
I actually resourced my own NDT and self treated so I don't need any help off the NHS not that I would get it anyway because of NHS guidelines. Both my husband and I worked for the NHS for many years and saw what was happening to the service. We both left and I did not clap for the NHS because I don't believe they are doing a good job. I think cancer patients are suffering because what is happening now and my own breast screening was delayed by 4 months because of the coronavirus.
This was before the coronavirus I'm afraid and none of us can get Thyroid S at the moment. Hopefully once the virus is under control they will start manufacturing again because suppliers from Thailand just have it on back order for now.
It is nothing to do with the NHS. A lot of people do their own private blood tests and buy their own NDT or Levo online. They have had no choice because their doctor would not help them.
Forgive me if I’m asking what seems like a daft question - if you are having private blood tests and self-medicating how do you accommodate that in any existing or future NHS treatment for other conditions? Is it readily accepted within the NHS that you do this ? And what do you do if you cannot get supplies?
There is another NDT available at the moment or Metavive. I am in remission and not using anything for now but I do know I will need to self treat in the future because my GP goes just by the TSH which means nothing in my case.
I do agree with you here. The guidelines need changing. Drs need to consider the patients symptoms alongside the tests. Too many only rely on the tests.
Hi Jonathon, sadly I agree with you completely. My own nightmare started 20 years ago when I went undiagnosed for 2 years; I was living in the Midlands and working in London and I don’t honestly know how I drove up and down the Mways in the state I was in. In the end I refused to leave my GP surgery until he agreed to give me a blood test........ (I had no idea what for; at a this stage I had never heard of underactive thyroid and I found out later that it had been indicated in previous tests) and that was the start of another 2 years of inappropriate prescribing and poor QOL until I paid for a private consultant who immediately changed it. It then took some time - probably 18 months for me to feel well. I saw this consultant annually until he retired and then the merry-go-round started again and it hasn’t really stopped.
Add in the complication of a breast cancer diagnosis 3 years ago for which I had surgery and radiotherapy (I’m fine) - and we then enter a whole circus of prescribing without any holistic consideration of its impact on my existing condition. Coming off HRT was absolute hell - Chemo prevention hormones - hell - and oncologist later said I should never have been put on one of them. To summarise the long story, in the end I demanded to see an NHS endocrinologist- I was sent to a clinic where I saw a young doctor who said that he saw many patients like me, GPs do not understand prescribing, I was actually better to stay on HRT and keep my meds as before - for many complex reasons. He also said that thyroid disease is a bit of a Cinderella of health care which attracts virtually no research funding.
In the end I used a tool called NHS Predict which is freely available and allowed me to input my histology - this gave me a benefit number for the drug prescribed for future BC prevention - and the outcome was that ‘half and extra person’ would survive over 10 years of medication. This was not a compelling reason to spend the next 10 years being ill. I then went through the same exercise with my oncologist and he wrote to my GP, reinstating my previous prescribing and discharged me.
So far so good - until this week I had a ‘telephone meds review’ with a pharmacist and then a practice nurse who blithely told me that they would stop the HRT prescribing. ‘Who says?’ I asked. ‘BMS’ she said.? Deep breath, try not to explode when dealing with ignorance - it’s a waste of breath. Her manner and attitude was one of total ignorance and arrogance. I am very, very angry about it.
The problem these days is that you are dealing with people trained in NHS protocol which they follow slavishly because it obviates the need to use judgement and thereby expose themselves to making decisions. It’s a safe option and they don’t care on iota about the individual. I understand why the protocols exist; they are based on proven results and numbers in general but are not a ‘one size fits all’ solution. NHS staff react to a challenge as if you were questioning the Word of God - which in their eyes you probably are. I had to state very forcefully to my GP (who I like very much) that I was emphatically declining his offer of Gabapentin, Amatryptaline and any other psychoactive drugs - and would never take them as a solution to ‘depression’. Yes of course I was ‘depressed’, I had had BC and consequently lost my job of 20 years - but I was still able to manage my life!
Apologies for the long post; I honestly don’t know how the system can be changed; I have come across many individual so struggle with poor prescribing.
Im in the US and obviously things are different here but you said medication review with pharmacist, do they decide what meds you don’t need or do they consult with your GP before removing the meds? I have med review every time I see my Functional medicine doctor not to take anything away but to remove things I no longer use and I never hear from my pharmacists as long as I have a valid script they fill it.
Good question ! This is the first time I have had a pharmacist review so I’m really not sure what it’s for. He said he was going to write to my oncologist which I’m not happy about. He sent me a sheet to complete with daily BP readings, which I have done so I will return it and ask to speak to him to clarify what’s happening. It was the nurse who I felt was exceeding her duty. How you describe it makes perfect sense - the NHS can be very poor communicators at times .
I take Gabapentin for post-chemotherapy neuropathy. I had intense feeling of pins and needles that would spring up in one spot, drive me crazy, and then move to another spot. 100 mg of gabapentin 3 times a day, prescribed by a neurologist, has completely eliminated that problem for me. I've never heard of it being prescribe for depression -- unless, perhaps, you feel depressed because you are in a lot of pain. It hasn't affected my cognitive functioning or mood at all, though.
I’m sorry, I didn’t mean to imply that any of the drugs mentioned don’t have value and use in the right circumstances and I’m really pleased you benefitted. I was only referring to my own case; I was offered amitryptaline to combat cluster migraines - and gabapentin to combat extreme hot flushes - both symptoms of stopping HRT. I took 2 Amts and the next day wandered around feeling like someone had stolen my identity - I can’t describe it any other way . I knew about Gbp,; I declined it. I was offered a. SSRI which I also declined. After a lot of research and close consultation with my oncologist, I went back on HRT - and went back to my normal.
But it was a battle, rather than a logical discussion around choices - and a Doctor said to me ‘you always get your own way’ - which wasn’t said in a nasty way particularly - but nevertheless made me feel uncomfortable and irrelevant in the decision making about my own health .
I understand why NHS protocols and guidelines are essential but no one should be admonished or belittled or threatened for wanting to make their own choices.
I was prescribed Amitriptyline for depression after I quit smoking. I had gained 5 pounds a week for 4 straight weeks and was sleeping 12 hours out of 24. After I took the drug, I gained 10 pounds in 1 week and was sleeping 18 hours a day. I still had uncontrolled crying jags. But worst of all, my heart was racing. Went back to see the doctor, who told me I had to stay on it for 6 weeks to tell whether it was working. I went home and got really, really mad. I called up the HMO and demanded to see a different doctor the next day. They complied and the new doctor, a woman, did what he had not bothered to do. She reached over and took my pulse. She immediately switched me to Prozac which did not give me any of the bad side effects.
I also had a really bad reaction to going off HRT. This was right after the Women's Health Initiative that triggered all the doctors pulling HRT away from women. Despite my suffering -- horrendous hot flashes, lack of sleep, inability to concentrate (gee, wonder why?), weight gain--no doctor I saw would give me back the HRT. I ended up ordering it from a New Zealand pharmacy. Several years later an OB-GYN I was seeing told me "We can do better than that" and wrote me a prescription for it again.
Oh gosh - that’s so awful: I’m so sorry you went through all of that and your experience demonstrates why we should be listened to.
Sadly not every GP is willing to listen to, or even ‘look at’ the person they are prescribing for.
Everyone is different and it’s not just doctors who seem to think HRT can just be ‘stopped’. It seems that feeling well and functioning is a crime ......as had often been the case with my hypothyroid treatment as well.
We have stood up for ourselves and will continue to do so. Many aren’t able to do that and suffer unnecessarily .
"debilitating" is a word I use often. I haven't been ableto work for months now and not getting paid due to Dr ignoring my thyroid symptoms for three years. All I needed was an increase or T3. I have an appointment with a private pay practitioner in a few days. I hope that your situation improves.
Thank you. It's awful trying to struggle on your own. If my next blood test shows "normal", I'll be going privately. Hope all went well with your appointment.
I'm really sorry for your situation. But I think there's something to be done: you can order T4 from abroad the same way you order T3. I hope that helps. I wish you all the best!
Well said. The accountants are running the NHS and preparing it for sell off to the highest bidder. With regards to training for would be doctors and other medical professionals. I really believe that medical training on the endocrine system and the devastating effect that a malfunctioning and undiagnosed thyroid can have on the presenting individual is totally inadequate and has been for the last 40 years. Sadly, unlike some other 'high profile' illnesses' the charities linked to the Thyroid and other auto-immune syndromes appear to exert little pressure, or have much clout. Until they do, the medical profession are unlikely to take notice and change practice.
Animal thyroid, dried, powdered, standardised and made into tablets.
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Do you mean an underactive thyroid? 275-250 what? mcg's? of T4? 150 mcg's of T4? Do you have a copy of this blood test? Have you been on T4 oly or any combo with T3?Or Ndt?
If you want to get copies of the results of any testing you've had done by the NHS there are various things you need to know.
1) Never ask a GP for copies of test results, always ask the receptionists. If you want information from your medical records and test results from a hospital you will have to search the hospital website for the contact info for the medical records department.
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3) In England we are entitled to online access to our medical records, including blood test results. Scotland, Wales and Northern Ireland might not allow this - they are dragging their feet on this big time!
4) If online access is unavailable then ask for printouts from the computer, don't accept verbal or handwritten results.
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If you get tested privately, there is no reason to pay to see a doctor privately too.
For information on how to pay for your own testing either with fingerprick testing or with a blood sample taken by a qualified friend or a paid-for phlebotomist, see these links :
Also look out for discounts from medichecks on "Thyroid Thursday".
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Excess hair shedding 
Stopping levothyroxine
Reverse T3/over treated with conventional drug
Heart breaking hair loss can anyone give me some hope?
