Hi all . I wonder if anyone can help 're my thyroid test results and how its being treated. My serum tsh level is 9.2 now after starting treatment on levothyroxine in May this year. .25mcg.to 50mcg. On review the gp spoke to me by phone I hadn't seen her before but she said my other reading looked like it was stabilising . I said really .? With a reading of 9.2 thats not ok tho is it. .I hoped you would be increasing it .she asked if I was tired now at all .? I said no I never was . She then said they could increase it but for now she thought would stick at 50 mcg.and test it again in 6-8 weeks. .I was a bit upset about this as my only hope of feeling well and getting to the optimum dosage has now been postponed . After that I have felt worse now getting chilled inside and hands .tiredness I didn't have before. . Had to go back to see a diff dr again this time with severe neck pain left side.and back neck and tooth pain so bad I couldn't cope . This Dr after examination has just given painkillers and immediately said your thyroid medication is too low . Put it up to 75 mcg.now without retesting my levels as said it would never get better at that dosage which I had already said .being under medicated . My serum free T4 level is 12.1 not even in the reference range .if 12.0 -22.00 .
Am a bit annoyed the first Dr decided put off increasing my medication. On what basis I don't understand but the other Dr obviously thought that was wrong. .
My neck is still hurting but Dr didn't seem to be too concerned . Am hoping for some improvement . My biggest problem is the low mood that comes on when get inflammation flare up behind eyes and in head been treated sprays and anti hist.for sinusitis am coughing up mucus excessively for past 3 years .nothing helps.I have also been struggling walk unaided now after a bad attack pain head last July . A trip to a and e but Dr couldn't authorise a mri scan as said long as you can walk not in a wheelchair .not lost control bowels etc I don't fit the criteria. Since then I have had no investigations into walking as the gp I saw most time thought it could be thyroid related. .I don't know many people that have been forced to buy a mobility scooter to get around who have no idea why but I did.
Also I can't apply for a blue badge here as need Dr proof and so far there's nothing proven Mri.spine was finally done last Sunday but doesn't show anything causing the walking problems . I have slight arthritic hip and knee left side .I can hardly get out I use a stick now and hubby has to give me his arm as don't trust my legs to not suddenly give way . My mood seems down and not myself . Every day wake up unable cross room without holding onto walks chairs etc. Just wish the thyroxine would make it all disappear but doubt it will sorry long story there's even more but that's the latest part lol x
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Wendy2186
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Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
if over 60 …..usually START on 25mcg …..but still need to increase dose slowly up
Some people need a bit less than guidelines, some a bit more
TSH should be under 2 as an absolute maximum when on levothyroxine
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
Very important to test vitamin D, folate, ferritin and B12 at least annually when hypothyroid/on levothyroxine
What vitamin supplements are you taking
When were vitamin levels last tested
Lower vitamin levels are more common as we get older too
Hi. Thank you for replying so quickly. My vitamins were all ok. Think vitamin d results said abnormal but when I questioned that a diff gp.dismissed it as fine. Anyway being just outside normal I have started taking those .why labs would say abnormal speak to patient if it wasn't ok I don't know it's hard to discuss things as I get told i can only discuss one thing at appointment s in ten mins and they get annoyed .having something affects your whole body .I had my walking problem sinuses problem. Thyroid problem. Was sent chest clinic who said all ok. I should be sent to see orthaepedics .I haven't. I should be sent thyroid specialist but haven't as the gp.sent them a triage message asking if there was an alternative to taking thyroxine as I reacted badly to it before .this apparently cancelled my referral as the reply was no there wasn't anything else. I must add that I took thyroxine and thyroxine 20 years back and ended up very ill both times. .tho Drs refused to take me off them . I had to and got well again after back to being myself. Functioning again . I just can't cope with the not walking I am 69 .so guess they are taking it slowly but I don't notice any I'll effects this time thankfully . I think I should be seeing a Neuro specialist but once have thyroid problem it seems you can't get investigated until the levels are correct then I may be taken seriously. Sure if anyone suddenly couldn't walk they would be sent Neuro or orthaepedics . Thanks for help. I am just not sure treating readings is reliable as not feeling better causing other things it seems.
My vitamins were all ok. Think vitamin d results said abnormal but when I questioned that a diff gp.dismissed it as fine.
You really need to see the actual results
GP will say a result within range is “fine”
But on levothyroxine we MUST have GOOD vitamin levels
Vitamin D at least over 80nmol
Serum B12 at least over 500
Folate at top of range
Ferritin at least over 70
Breathlessness often low ferritin
It’s ESSENTIAL to be on high enough dose levothyroxine
Levothyroxine doesn’t “top up” your own thyroid…..it replaces it
If left on too low a dose you become increasingly hypothyroid
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
This currently only applies in England, not across the whole of the UK. Nether Scotland nor N.Ireland have released an NHS app for patients. (Scotland supposedly due in December '24.) Wales has an app, but only for booking appointments, repeat prescriptions and amending personal details
I had severe walking problems when my medication wasn’t right. Basically I had virtually no energy to even hold my own body up properly. It was a very long process. However, in the end my issue was my thyroid medication. I have Hashimotos and I’m a very poor converter of T4 Levothyroxine to the most important hormone T3. I was only converting 8%. I had all sorts of tests by the NHS too many to list really. I went private in the end and was prescribed T3 liothyronine medication alongside the T4 Levothyroxine I was already taking. Oh boy oh boy T3 was a massive game changer. Within 2/3 days suddenly I could walk normally unaided. Within 2/3 weeks I had bags of energy and my life was back. I lost 4st within 9 months without even trying to, my metabolism was now functioning as it should. I’d suggest you get your t3 tested as soon as you can to see if you’re converting well enough. If your GP or Endo won’t do it then go through Monitor My Health on line privately, it’s not expensive. Definitely check your T3. Also ask your GP to check your vitamins, they should all be optimal and if not start supplementing.
Wendy I have been putting off the wheelchair issue but recently got one to go to my nephews wedding in Northern Ireland. In my experience it’s like lots of things hypothyroid. Doctors are just not clued in at all. They seem to have no idea how disabling, humiliating, anxiety producing their attitude instils in patients. It’s like they are on some weird other echelon and they definitely don’t act like healers.
If added to that you ‘look’ ok and many of us seem to …. it’s all the worse trying to get them onside.
I hope you have a lot of ‘will’ you are going to need it to sort out this mess called thyroid treatment.
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AnotherBrick Wall (aka) Endo .. Where next?
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it’s me again kowbie
