Hi All, I was wondering if there is a change in tsh levels that it could make you feel better or worse.
I went to my GP complaining of loosing hair, putting on weight (even tho my diet hasn’t changed) feeling tired, emotional and the list goes on, she sent me for blood test and only checked my tsh, which that’s all that they will check, results came back normal, when I compared them from last year there was a change and I don’t know if that is why am having these symptoms.
My results September last year were
Tsh .72 the range was 0.30-500
My result this year
Tsh .43 range was 0.30-5.00
No other thyroid tests were done just the
Chris
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Thank you for replying. I actually said to GP that it’s no good just checking tsh and that he would not tests any other thyroid test and to just refer me back to my endocrinologist as she will have all the tests done, I had to wait for results and he was adamant by tsh result that I was fine, I think I will go back next week to see another GP and ask the to refer me back to my Endo.
I don't know from experience as I still have a thyroid (although it's probably pretty useless after 44 years of hypothyroidism), but even with no thyroid it would be necessary to know our hormone levels. Maybe someone with no thyroid can answer that more accurately.
All advice will be great and I do appreciate members replying to me but yea someone in same situation as me (no thyroid) who could give me advice would be great.
There's really not much difference in those TSH results, but it's not adequate testing anyway . Far from it.
You have symptoms. I would ask for further investigations - ask for a referal to an Endocrinologist.
You need the following tests: FreeT3, FreeT4, Total T4 and TSH . Blood Test needs to be first thing in the morning & fasting. Omit Levothyroxine till after test.
If you've never had any Antibodies tested then ask for these too: TPO and TgAb (Thyroid Peroxidase and Thyroglobulin Antibodies ). You could say - as you have many symptoms of Underactive Thyroid /Hypothyroidism you would like to eliminate or confirm Autoimmune Thyroiditis.
(Do you know if you have Hashimoto's?)
Ask for some nutrients levels to be tested also : Vitamin D, Calcium, Vitamin B12, Folate and Ferritin. To see if you have any deficiencies that need addressing with the right supplements.
Write a list of your symptoms to take to GP and keep going to see them till you get appropriate care. Take your temperature first thing every morning - if it's low keep a record and add to list of symptoms.
What if you have a low TSH AND a low FT4 & TT4 ? Which would mean a problem affecting the Pituitary Gland? How would you know?
You could also ask for an Ultrasound scan of your Thyroid and Parathyroids.
Not sure how far you'll get - keep asking.
Have your Adrenals ever been checked?
EDIT
Sorry - just read that you have no Thyroid. I assumed from your lack of knowledge of TSH that you were a new poster.
It would help if posters would give significant info up front.
Thank you for replying, I had a total thyroidecomy in 2009. I do supplement my vitamins, b12 but should really get them tested also. I just need GP to refer me back to my Endo....will go back next week and speak to different GP.
Don't know what dose Levothyroxine you're on or if on T3. No experience of no Thyroid. So don't know difference in treatment. Don't know where your Parathyroids are now or how they would be checked. I suppose Bone blood test (Calcium and Phosphorus ) would be a start.
Hopefully a different GP will do more thorough testing and/or refer you to a Specialist.
It was never mentioned if they had been relocated, I was told that they were not damaged in surgery. You got me thinking now, maybe I should ask my GP.
I have no personal experience, so only know of this from what I've read of other people's experience on here.
Did you get copies of your hospital records? Was the only way I found out what conditions I have and results of investigations / reports etc. You can get them free of charge now (since new rules 25 May 2018). Apply by email or letter.
Yes, you can ask for everything. Blood test reports, xray, scan reports and images (if you want them too - they'd probably give you a CD); notes. They can't insist you fill in a form now, just need to ask in writing (letter or email).
Just as a point of reference a fully functioning working thyroid would be supporting you daily with approximately100 T4 + 10 T3.
I just think it makes common sense that both these vital hormones should be on the patients prescription if there has been a medical intervention of either thyroid ablation or thyroid surgery.
Some people can get by on T4 ( Levothyroxine ) alone, some people just stop at some point in time, converting T4 to T3 and some people simply need both these hormones dosed and monitored independently, to bring both hormones into balance and to a level of wellness acceptable to the patient.
As already stated without full blood test results including the vitamins and minerals it's impossible to give you any clear idea of what to do next, other than ask your doctor for the blood tests, try a different doctor, or undertake the blood tests yourself, as many of us on here do.
When with the results post back on here plus the ranges for considered opinion, from people better able than me.
It's a massive learning curve, but we've all been there, but there is better health, though you may have to do some of it yourself.
There's one particular book that is a go to of mine, and written by a doctor who has hypothyroidism. It's an easy, sometimes funny book but full of everything we all need to know about this amazing gland that is responsible for full body synchronisation including your mental, physical, psychological and spiritual well being.
Your Thyroid and How To Keep It Healthy by Dr Barry Durrant - Peatfield. - sadly we haven't the gland any longer, but do need to know what it does so we can attempt to compensate for the loss.
Try to get T3 in this country is really tough, my GP would not give me it he said it was a black drug, so that was the end of it but my Endo did trial me on it but once discharged my GP refused to give me it 🤷♀️ Just can’t win.
I understand your predicament many of us have been in the same situation, so have had to resort to self medicating with either T3 or NDT.
I purchased both the above myself and they both made a massive difference to my level of well being, and have decided to stay on Natural Desiccated Thyroid.
I know it's not ideal but what is the alternative ? Stay listening to doctors and endos who actually do not care about you and simply follow rules and dogma in order to keep their jobs.
Self sourcing T3 and or NDT need not cost anything like the prices quoted through the NHS. procurement procedure which has become, for T3 at least, a national scandal.
This debacle is just another thorn in our sides but we can by pass this stupidity, along with the other stumbling blocks that have been put in our way.
I found the stress of trying to get a trial of T3 , let alone thorough thyroid blood tests through my doctor totally exacerbating.
I'm relieved to now be on NDT, not needing to see the doctor who will look for my TSH, tell me I'm over medicated, and reduce down my thyroid hormones and offer me anti depressants as a consolation prize.
No, this site has empowered me to take my own steps back to better health, and you too are worthy of a better health than the Nhs considers as acceptable.
I'm with Graves Disease post thyroid ablation in 2005 - became very unwell some 5 years ago but now getting better, due in very big part, to this amazing website.
Hi Pennyannie, I agree that sometimes you have to take your health into your own hands and I am all for that...buying your own meds T3, NDT but you also got to have the money to fund it as you would have to pay for the meds plus private blood tests to make sure all is well....me personally is unfortunate to have GP who only works on the tsh. It is something to consider but I worry if I will be able to afford to carry on funding my welfare when I am retired 🙁
Well, I did think I'd have this problem being 72, single, and in a " shared ownership " property with a Housing Association.
My NDT is currently costing me around £50 a year, supplements around £15 a month and blood tests around £100 yearly, and am hoping the latter two outgoings will reduce as I become stronger and my health more robust.
I found there was little point being retired when unwell and pretty much housebound.
I can't fight the Nhs system - but here is an option and there is choice.
I was buying Armour at one point and that was costing me £79 every 3 months and I don’t know if that price has changed. I supplement and that costs me around £15 a month.
NDT sounds much more affordable but I don’t know where I can purchase it, my GP has only ever offered Levothyroxine.
There are some doctors, though very few, who do prescribe NDT and T3 on the NHS.
Both are currently very expensive through the Nhs. hence the reluctance to prescribe.
If you look on the website - openprescribing.net/analyse - you can enter your surgery along with the brand name Armour and see if any surgeries in your area prescribe it. Similarly you can enter T3 as the brand name liothyronine and check out both your own and other surgeries re prescribing T3.
You can self medicate, thereby not relying on your doctor to prescribe, and coming out of the vicious circle we find ourselves in.
I know it's not what we want, I know it's not fair, if I had the money, maybe I would have gone private and had someone to help and support me, but I am where I am, and am doing as best as I can.
If you ask in another " fresh " post for " supplier of NDT please by Private Message " or worded something like that, people will answer you through the private chat facility and share their trusted source of supply with you.
Thank you pennyannie for the information you have given. I will look into the open prescribing net.
Your right it is not we want but because they fail us it’s the only other way to take our health into our hands and there is no better site than this that can give you sound advice, I am grateful for this site as it has been good to me over the years.
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