Sorry for the long post. I think I'm going mad......or am I? got new GPs at our surgery who seem to be obsessed with TSH and appear to be dismissing physical symptoms....unfortunately nothing new I know.
Late in 2021 started feeling unwell and through a Medichecks test concluded I was iron deficient and so approached the GP. They put me on iron supplements at Xmas (until June) and were also adamant my thyroid levels too high and so reduced me from 175mcg Levo to 150mcg (am on T4 monotherapy). Bloods taken again in March 2022 but GP didnt contact me until start of July to say they considered Levo still too high and reduced me down to 125 mcg - had quite a battle on the phone resisting the reduction but unfortunately lost the argument, even though I said I was already feeling the difference from changing from 175 to 150 earlier in the year. All the doc was interested in was the TSH levels, when I mentioned the consultant had told me 12 years ago to ignore the TSH and keep FT3 & 4 in the upper quartile of the range, he just replied and said he had never heard such rubbish. I haven't seen an actual doctor for over 6 years.
I now feel quite unwell (on 125mcg Levo) - on a go slow, feeling cold, easily fatigued, falling asleep on sofa all evening, memory issues, lack of concentration, tired, neck swelling up, hair loss, pins and needles in hands etc - and other usual hypo symptoms. Autoimmune diseases are rife in the family, and as I have had one adrenal gland removed I'm now worried what impact this is all having on the remaining one. Some of my blood results attached. Was on supplements for Vit D but had reduced them but can see I need to increase again, likewise looking like ferritin too low and possibly a B12 issue brewing. Always get bloods done around 9am and fasting. Not always on same brand of Levo - but usually Teva for 100mcg and Wockhardt for 25mcg.
I'm interpreting the results as the GPs have reduced my Levo too much and I need an increase?? But also wondering if there might possibly be a pituitary issue? Any thoughts or advice please.
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Rollercoaster44
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Good for you keeping brilliant records. Now do the same for symptoms on a month to view calendar. Not a dear diary but just significant notes when you notice try to back track as far as you can. This will help you explain what this mistreatment had done to you.
AND! You are right in everything you say and your endo was right. This needs rectifying quickly. Can you see the original endo again? Do you have any paperwork? Or get them to send a confirmatory letter? Your GP is total imbecile. Also to ignore your symptoms bought on by their mistreatment is wilful neglect. You need to change doctor, change surgery if needs be.
I would say this was unbelievable were it not for the fact that I have been reading instances if this over and over.
Thank you for comments - has restored my sanity! I only received access to my NHS blood results online last week and it's been quite an eye opener looking back over the years at the lack of investigation the GPs have done. My first ferritin test since 2002 was in Dec 2021 by the looks of it. The only supplements I've been on is Vitamin D 12.5ug - previously on 25ug and got levels up to high 90s - so am now back to taking 25ug. Ferritin was stopped in mid June 2022 but no test done by GP to check levels - no sign of any iron panel on file although I have had them done via Medichecks. I had been on Natures Best Multiguard without Iron for about 4 weeks back in August but stopped taking them 10 days prior to blood tests. I haven't restarted them as am about to raise a call with the GP and suspect, or should I say hope, they will do some further blood tests.
I don't recall ever having had a celiac test and will request one - although about 10 years ago I did try going gluten free but at the time it seemed to make little difference. I'm not vegetarian and do eat dairy each day. |Currently weigh approx 90kg - was 87kg before dropping to 125mcg of Levo in July. I'm just so cross with the GP as had been 175mcg for a number of years and was stable and well, and relatively symptom free - only thing not right was the virtually suppressed TSH.
Thanks again for everyone's comments and support. It's good to know I'm not alone.
you have my deepest sympathy ...I’ve gone through the same. It’s almost as though you could end up with the worst hypo symptoms and some doctors would still be saying .’yes but your TSH says....’ ! I was reduced from 150 to eventually 100 but I alternated with 125 feeling as felt rubbish. My TSH has actually been around 0.02 for 20 + years but it was newer younger doctor obsessed with TSH who suggested reducing it..
Previously my older doctor had asked how I felt (how novel!! ) and as FT3 and FT4 were fine he, and I, were happy. Of course what was happening was that TSH was the ONLY test they were doing.
I had had a private blood test which suggested that because I still had hypo symptoms I may benefit from additional T3. Then along came Covid. I was slow, cold, constipated, dry skin etc and actually had a TIA 2 years ago during lockdown and I’m sure the reduction in T4 played a part as being hypo can increase cholesterol and this seemed to be the main cause.
Long story short I asked to see an Endo and now on 100mcg T4 and 10 mcg T3 but also due to TIA on blood thinners and statin. I feel good have lost weight and have an Endo who is unconcerned about my 0.02 TSH.
Stick to your guns and raise your T4 dose until you feel good.
I so wish there was a test to tell if your a poor converter. My daughter has a gene which could be implicated. And a simple article to explain to doctors the limitations of TSH! I’ve picked up info about this on this site and hope you can do the same and persuade your doctor that symptoms trump TSH results. Ask the doc to explain your symptoms then?
When on T4 - monotherapy the accepted conversion ratio is said to be 1 / 3.50 - 4.50 T3/T4 with most people feeling at their best when they come in this ratio at around 4 or under.
So to find your conversion ratio you simply divide your Free T4 by your Free T3 :
We generally also feel at our best when our T4 is in the top quadrant of the range and where this little ratio test is best used - as when T4 is low in the range the body protects T3 levels over T4 and the differential not as obvious.
On the results above we see that with a T4 at 15.4 and a T3 at 3.80 this comes out at 4.05 - so conversion starting to struggle - but first we need to get the T4 increased back up to where it was.
Once conversion starts to struggle, metabolism slows. and the body struggles to extract key nutrients from food and then the core strength vitamins and minerals, of ferritin, folate, B12 and vitamin D start to fall through the ranges compounding the problem as these 4 need to be maintained at optimal levels to aid the conversion of any thyroid hormone replacement.
Obviously the doctor is wrong and it's so disheartening when you are meant to trust the medical professional but have little say in what they ' deem ' as the appropriate treatment.
I too went round the twist, and down a Helter Skelter and now self medicate.
This is really interesting as my endo insists my levels are good even though I'm still feeling rubbish... my FT4 is 18.1 and my FT3 is 4.43 which means my conversion rate is 4.08. The TSH reading is 3.53, which she says is good.
Where can i find official details of this conversion test to show her? And do you think I should ask for a t3 med too?
She's referring me to a rheumatologist as thinks that my persistent symptoms may be due to rheumatoid arthritis... I am experiencing dreadful pains in my wrists on top of everything else!
If this question was for me - I do not know of any official research regarding this T3/T4 ratio.
However a TSH of 3.53 when on thyroid hormone replacement is much too high and you need a dose increase in whatever thyroid hormone replacement you are currently taking.
There are several research papers on this forum detailing a TSH once optimally medicated will be under 2 and we generally feel at our best in the lower part of the TSH range.
I've just linked you into a post regarding TSH levels: you should receive notification.
I’m no expert at all and anything that has helped me, I have learned through this site. Are you currently on Levo as if you are I wouldn’t be happy with a TSH of over 3. But just wanted to comment that when I was under medicated or get flare ups that I get pain in my wrist and thumb. I got a recent scan of the thumb / wrist done recently and it was only showing minor inflammation so I am convinced there is a link between my thyroid levels and joint pain. Others in this site also link thyroid and carpel tunnel too. Unfortunately you might have to let the doctor run all these tests today to rule them out first!
Don't dismiss the idea of a rheumatology referral. My first rheumy consultation was a masterclass in how to interact with a new patient. A thorough physical examination, a comprehensive range of blood tests arranged, and plenty of general questioning. I always get a full thyroid panel through them, and they are willing to pass on comments about my thyroid status and recommended dosage to my GP. Give them a go! Good luck.
strange pains in wrists was one of the symptoms that came up in a small thyroid group in the 80s.( Face to face ... pre internet!). Along with cold shoulder and general aches and pains. Looks like you need increased meds and you doc needs increased knowledge!
I’m having the same problems with new Gp surgery after we moved! After thyroidectomy 40 years ago (Hashimotos deemed the culprit) I was on 200 Levothyroxine and T4 was always high end 22/23 but only way symptoms keeps at bay (other than cold extremities and constipation). I have had a year of fighting new GPS (never seem to be able to see the same GP) and they know nothing about having blood test first thing before food/drink, and my suppressed TSH (which has been the case mpfore more than 10 years) is the huge issue for them! I am so tired of fighting them. Just feel like buying my own thyroxine from abroad and going back up to my previous level of Lego rather than the 150 I’m on at present. The symptoms came back with a vengeance and the GPS don’t seem to take them into consideration! Had an endocrinologist appt 3 wks ago (after waiting 6 months) and I had to stick up for my corner to get her to agree to an increase of 25mg with another blood test in 4 months. She will write to my GP so off down there later to see if the letter has arrived. Had a whole range of blood tests following my appt, D3, and many of the tests indicated above - and they were all normal! I have to have a test for osteoporosis as she said suppressed TSH could result but I don’t accept that as D3 is a treatment and I’ve been taking D3 supplements for years!! I’m angry and confused at the same time because I feel like I’m treated like a plank of wood and my symptoms don’t matter!!
asked for T3 to be tested last november to be told, its not necessary. Finally, another GP tested in april/may+was told it was 'within range' when I rang surgery for results. I was within range over 40 years ago when all hashimtos symptoms began - yes right, 11 is within range but it's only function@22 or 23! Im 73+think at my time of life I can take a risk or two when it cones to my health+my TSH!! GPs have only ever tested T4+i ve been made to feel like a duffer for even asking for. T,3 test.
I gave up that fight 10 years ago…..like thousands of others I get my testing done privately via Medichecks or Blue horizon once a year - and give copies to my GP to put on file
If I adjust dose in between annual test …..would always test TSH, Ft4 and Ft3 6-10 weeks after any dose increase, or 8-12 weeks after any dose reduction
Come back with new post once you get FULL thyroid and vitamin results
List of private testing options and money off codes
have you got access to your records through NHS login or Patient Access (one of the many platforms to book appointments order meds on). .? I was able to see that my TSH has been extremely low for at least 20 years and I’d been fine but only when they started testing TSH alone did doctors become neurotic about it and say I had to lower meds.
haha ..well you signed up to this site and the NHS one is no different! Email address, address password etc, d.o.b. And may need NHS number which is on medical letters. Worth doing. Quite interesting as can see medical history - though there are no doctors comments like ‘here comes that neurotic woman again’ or such like one in particular would love to have put! Give it a go!
Yes I too am without a thyroid due to RAI thyroid ablation in 2005 for Graves Disease.
The situation is dire - I wasn't a plank of wood but referred to as a conundrum and after 2 years going around and around various O/P departments where no one would confirm or deny my suspicions of RAI damage and undermedication of thyroid hormone - as then on T4 monotherapy - I gave up and now self medicate and am much improved looking after myself and now just running a yearly full thyroid panel - more to see where my vitamins and mineral sit than anything else as I know my brain is back in the room, and most days I too am back to the ' old me ' !!!
its just so helpful to know im not battling alone! My gp previous surgery was great+I could talk to him but not so@this large medical centre! Told my husband um going private if needs be as just had enough now of battling with these people!
You need to start reading up and so become your own best advocate :
Your Thyroid and How To Keep It Healthy might sound an odd title of a book since we haven't a thyroid but Barry Durrant-Peatfield is a doctor who has/d hypothyroidism and he wrote the book to equip patients better to advocate for themselves as he objected to the new rules and guidelines he was meant to work to and eventually resigned from the profession.
Thyroid UK is the charity who supports this forum and where you can start reading up on all things thyroid and, where you will also see a page of recommended reading and buy the above book, should you wish.
You'll start your learning curve and thyroid journey just by reading the hundreds of questions and replies on this forum.
It's where we all start off - I fell into here around 6 years ago researching low ferritin and now come back on to help and give back as it's a patient to patient support group and just so grateful for the help and support I received - details on my profile page.
I read Thyroid Power many years ago by an american dr+found it so helpful. I also get updates from a couple of other US drs about diet+supplementation. Its only since we moved house+surgeries that all the issues began, esp re TSH suppression. Ive been on same dose of thyroxine for nearly 40 yrs +10 of those my TSH has been suppressed+only now with different drs having their five pennyworth when picking up my blood results is their a problem. I now have to wait until 26 Oct for appt with GP who referred me to endocrinologist to discuss whats in the consultants letter!! I just wonder if a private GP would be a better option?! Thanks for yr input.
Well I wasn't well enough to travel far enough to see the specialist I would have chosen to go to from the Thyroid UK - patient to patient - recommended list of specialists and endocrinologists.
So push came to shove and I did it for myself having wasted money once being told to go on the internet, buy it yourself, and then come back to ' me ' privately ( Head of Endocrinology at the only hospital in the county ) - and I'll test and monitor your progress.
So incensed and angry I decided to save my single person 's state pension for myself.
I think you need to research who you might like to go and see privately as there's no guarantee the knowledge is any better and why you need to know the nuts and bolts of it before trusting anyone else with your health.
You can get ' the list ' from Thyroid UK and you can ask for feedback on anyone you are considering seeing by the messages must be by the Private Message facility and within forum rules.
I became so unwell, that amongst my multitude of symptoms, I had little (no) control of my emotions including my temper. That did the trick!
They still wouldn't accept that my world was falling apart unless I was willing to be referred to an endo though. He told my Dr that I know what I'm doing and she should back off, and just give me what I need. Not T3 of course, he wasn't good. What a waste of an endo appt. though, that someone else may have actually needed.
Funny my seriously low B12 seems not to be an issue to them. Again left to treat myself.
Don't give up, and don't ask, TELL them what you need, and keep TELLING them until they listen!
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