hi all last week my GP refused to depense my medication unless I had a blood test even though my endocrinologist wrote to tell them my findings of my blood test 3 weeks ago 😤 I am currently on 100mg Levo, I am full thyroidectomy patient, also on hypopara so on alfacalcidol and ADCAL. What makes your TSH to up, would u believe doctors comments 😤😫😝 I’m so thankful for this site now. Thanks everyone 🙏
blood results from GP what’s your thoughts? - Thyroid UK
blood results from GP what’s your thoughts?
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Thyroid36
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Hi Thyroid36 . the comments are not from the GP.. they are lab comments not specific to the individual and are added to all thyroid test results.. in your case the comment is not relevant as you are taking Thyroxine and will be ignored.
So .. you had a blood tets from Endo with TSH 3 ish (on 100mcg levo ) . did End suggest an increase in Levo dose ? . probably should have, as TSH of 3 is a bit too high for a treated patient. .. and if you don't feel well it would be the first thing to try .. no point considering T3 untill you have optimised Levo dose.
and now GP has done a further one with TSH 8 ish .. still on 100mcg Levo .
This shows your 100mcg dose of Levo is insufficient and GP should now increase Levothyroxine dose .
Don't be too quick off the mark to criticise GP for not prescribing repeat without own bloods a) may not have any choice and needs own NHS tests before prescribing .
b)... latest results may have done you a favour actually . as if GP had not got an up to date test. they may not have left your dose as it is .
Ah yes I thought they were lab comments but when I asked the secretary she said there the doctors notes and he will review in 3 months and I said no it’s too high I need my medicine reviewed. Yes yes 💯 the doctor requesting the bloods has shown the TSh higher again so 💯 t4 is not working and your so right fix t4 first . Looking at all the other results as well I know they are classed as within lab range but thr b12 and blood count all seem very low as well. I have only just started to request and look at my blood results so I am learning about what should be right.
will tag SeasideSusie who can help with B12 & other results.
To answer your question " What makes TSH go up ? " ...
TSH (Thyroid Stimulating Hormone) is a message from the pituitary gland (brain) to the thyroid gland .. asking it to produce more/ or less thyroid hormone (T4 /T3)
When the level of thyroid hormones has fallen too low for the body's needs .. the pituitary increases it's production of TSH to ask for more T4/T3.
Once it senses the body is getting enough , the level of TSH will lower again . (In healthy people TSH level is usually around 1 ish )
If thyroid can't manage to make enough T4/T3 .. because it's damaged / removed and doctor doesn't increase the dose of Thyroid Hormone by enough then TSH will continue to rise .. asking 'louder'
100mcg wasn't enough.. your TSH was 3 (if it was enough, you would expect TSH to be lower) .
Dose wasn't increased so pituitary carried on asking for more and TSH got to 8 .
For example ...if your Levo dose isn't increased now you would expect TSH to continue to increase further over following months.
If Levo dose is increased now , you would expect TSH to be lower in about 6 weeks time. you may need several dose adjustment to fine tune the optimal dose.
TSH can sometimes be quite slow to change in response to changes in thyroid hormone levels .. so we have to allow at least 6 weeks after a dose change to see effects on blood tests and symptoms.
(i find it helps keep it clear in my memory if i picture TSH and fT4 on opposite ends of a see-saw:
If fT4 falls .. TSH rises.
And if T4 rises .. TSH falls .
ah thank you that has really helped me understand it now. And i suppose the higher the higher the tsh the more unwell you feel.
Yes ,, although the symptoms we feel are due to our levels of T4/ T3,, not the TSH that's.. just the messenger.
I se me makes so much sense thank you
SlowDragonAdministrator
Your B12 levels are absolutely dire
Folate level low
Are you vegetarian or vegan?
You need testing for Pernicious Anaemia before starting on B12
Likely to need B12 injections
Or certainly daily B12 and a week later add in daily vitamin B complex
Do NOT start any B12 or complex before testing
Request ferritin and vitamin D tested too
When hypothyroid we frequently become very deficient in vitamin D, folate, B12 and ferritin
hi thanks for your reply, I’m so pleased you have said all of that because I don’t understand numbers because this is all new to me and although they are shown as within lab range they are all very low which can’t be good. No I’m no vegetarian. Thank u so much for the advice I will make sure I get all this tested. I can’t Believe my TSH has gone up to 8 but at least looking at these numbers it’s means I’m feeling awlful cos things are not right rather than the numbers be ok and trying to figure what is wrong . Thank you so much again I am so pleased I found this platform.
SlowDragonAdministrator
was test done early morning ideally around 9am and last dose levothyroxine 24 hours before test
Are you taking your calcium supplements at least 4 hours away from levothyroxine
You need 25mcg dose increase in levothyroxine and bloods retested in 6-8 weeks
Meanwhile come back with new post once you get vitamin D and ferritin results
TSH 8.82 pmol/L (0.3 - 4.8) 189.3%
Free T4 (fT4) 16.4 pmol/L (7.7 - 20.6) 67.4%
Folate - Serum 7.38 ug/L (3 - 20) 25.8%
Vitamin B12 (active) 168 nmol/L (145 - 914) 3.0%
wow 189.3% gosh! Ok and if I relay all this information to my endocrinologist should agree? Fingers crossed 🤞
on levothyroxine the aim is to be on high enough dose to always bring TSH down under 2
Most people when adequately treated will have TSH around one or less
Most important results are always Ft3 (not tested ) followed by Ft4
For good conversion of Ft4 to Ft3 we need optimal vitamin levels
Vitamin D at least over 80nmol
Serum B12 at least over 500
Folate and ferritin at least half way through range
Being under medicated for thyroid and not on high enough dose levothyroxine results in low stomach acid, poor nutrient absorption and low vitamin levels
Approx how much do you weigh in kilo
What was reason for thyroidectomy
I see that makes so much sense, you explanation has made me understand so much more now. I had thyroiditus for about 7years my goitre got really big swallowing was hard and hi high antibodies that showed it would eventually go under active they said, but they always said levels were normal but I felt unwell. Then this last year I gained a stone in weight for no reason and my neck got even bigger swallow was like a ball bobbing in my throat, I had another ultrasound and they found multi nodules and also a thyroglossal cyst and they said we need to remove it very big and your under active etc. so I had it removed the surgeon said it was so big and mangled 🙈 were his words and they found more large nodules as well so I am pleased I had it removed because the swallowing was awlful. But they also could not save the parathyroid glands they died off, so I have hypoparthyroid as well. Now I feel terrible again and awlful can’t shift a pound in weight (feeling better is the main thing but the weight gain is annoying) I am 5ft 2 and 63kgs.
So you had Hashimoto’s - autoimmune thyroid disease
You need coeliac blood test done if not already on strictly gluten free diet
nice.org.uk/guidance/ng20/c...
1.1 Recognition of coeliac disease
1.1.1 Offer serological testing for coeliac disease to:
people with any of the following:
persistent unexplained abdominal or gastrointestinal symptoms
faltering growth
prolonged fatigue
unexpected weight loss
severe or persistent mouth ulcers
unexplained iron, vitamin B12 or folate deficiency
type 1 diabetes, at diagnosis
autoimmune thyroid disease, at diagnosis
irritable bowel syndrome (in adults)
first‑degree relatives of people with coeliac disease.
ok I will arrange that as well, is diabetes something to worry about also?
being under medicated for thyroid can result in weight gain and possibly high HBa1c
So possibly Type 2
Type 1 is autoimmune
Getting thyroid levels optimal and all four vitamins tested and at OPTIMAL Levels essential
how do I work the percentages out? Thank you
Lovely new calculator made by Decant
hi would you be able to explain the percentages for me please and how I explain those to the doctor using the percentages? Thank you thankfully I phoned the doctor and they are seeing me this evening .
GP very unlikely to understand percentages
1) TSH at 8.8 is clearly far too high and well over range
So you need dose increase in levothyroxine and bloods retested in 6-8 weeks
2) B12 result is extremely low
Technically it’s within range…..but only just
Request testing for Pernicious Anaemia before (ideally) starting on either GP prescribed B12 injections or daily supplements via prescription
Low B12 symptoms
If you any of these symptoms…..have a list ready
b12deficiency.info/signs-an...
methyl-life.com/blogs/defic...
3) Request iron panel test including ferritin and vitamin D are tested too as both frequently low when hypothyroid
4) request coeliac blood test if not had one
I should keep it simple and just concentrate on these four points
thank you so much! Well I struck luck with getting my the pernicious anaemia test thankfully she requested it and my endo has also emailed to say he will do the tests as u mentioned above plus Cushing’s syndrome (I have no clue what that is). She doesn’t want to alter my medication because she said I am a very complicated case so will instruct the endo on what to do with the medication 😂 🙈 but at least it’s a start I suppose. Thank you so much
Do you have online access to your blood test results
You are legally entitled to printed copies of all 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 receptionist is 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.
Link re access
healthunlocked.com/thyroidu...
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
You really want to see exactly what was tested before thyroidectomy and what hasn’t been tested yet
Astonished GP not increased dose levothyroxine
if endocrinologist doesn’t do full thyroid test…..You might want to get TSH, Ft4 and Ft3 tested yourself
cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
only do private testing early Monday or Tuesday morning and last dose levothyroxine 24 hours before test
Watch out for postal strikes
oh wow all this testing information is amazing! Thank you so much! I know right ! When thr GP saw the 8 was really shocked and like omg! 2 weeks after my thyroidectomy I was on 125mg and my results were
Bloods 2 weeks after thyroidectomy
do you remember….was this test done early morning and last dose levothyroxine 24 hours before test?
No reason to have reduced dose …..TSH wasn’t low
Unless you felt hyper?
yeah no I didn’t feel hyper at all I feel amazing i couldn’t Beleiev how good I felt.
I have emailed the hospital today as well requesting they can send my full medical records over to me tomorro. So I will have bloods dating back 8 years ago when it first started 🙌🏻
SlowDragonAdministrator
Low B12 symptoms
b12deficiency.info/signs-an...
methyl-life.com/blogs/defic...
B12 range in U.K. is too wide
Interesting that in this research B12 below 400 is considered inadequate
healthunlocked.com/thyroidu...
thank you for all the links
SlowDragonAdministrator
Once GP has tested for Pernicious Anaemia…..
If test is positive you should have several loading injections over first few weeks. Then an injection every 2-3 months for life
If test is negative and you don’t get injections
initially start on just separate B12 ….then after week or so add vitamin B complex
B12 drops
healthunlocked.com/thyroidu...
Or
B12 sublingual lozenges
amazon.co.uk/Jarrow-Methylc...
cytoplan.co.uk/shop-by-prod...
Vitamin B complex
If you have B12 injections it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.
This can help keep all B vitamins in balance and will help maintain B12 levels between injections too
If don’t get injections still recommended to supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)
This can help keep all B vitamins in balance and will help improve B12 levels too
Difference between folate and folic acid
chriskresser.com/folate-vs-...
B vitamins best taken after breakfast
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
Cheapest on eBay £18.75 at moment
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and continue separate B12
SlowDragonAdministrator
How long since thyroidectomy
Approx how much do you weigh in kilo
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
drknews.com/changing-your-d...
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
pubmed.ncbi.nlm.nih.gov/296...
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
nuclmed.gr/wp/wp-content/up...
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
restartmed.com/hashimotos-g...
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
I had my thyroidectomy end of 28th June 2022 (this year). I was a few kilos lighter but I had gained weight as well by that point also
an extremely high percentage of members with Hashimoto’s gain benefit from strictly gluten free diet
But rule out coeliac disease first
Always get same brand levothyroxine at each prescription
Which brand of levothyroxine are you currently taking
Teva brand upsets many people
ok So I should test coeliac first. I am on almos the packaging says thank you so much btw I appreciate your reply’s so much. Why do endocrinologists tend not to discuss any of this or even recognise to high or to low labs?
vast majority of endocrinologists are diabetes specialists and pretty useless for thyroid management
Anything within range….they often think it’s “fine”
On levothyroxine it’s frequently necessary to fine tune dose
INSIST on iron and ferritin levels tested
And vitamin D
Or test privately
NHS easy postal kit vitamin D test £29 via
Medichecks iron panel test
medichecks.com/products/iro...
Do you have any test results from BEFORE thyroidectomy
I am absolutely gobsmacked that someone with no thyroid had/has a TSH of nearly 9. Did the endo suggest an increase in your dose?
Also, whoever ordered the set of tests above (GP?) should have made it clear on the order that you have no thyroid and no parathyroid glands. In your situation the lab comments are farcical and dangerous.
And your GP refused to dispense your Levo until you had a blood test - jaw dropping. Did you run out of it? Not having any thyroid hormones at all could be fatal if it went on for long enough. This deserves a complaint, to both the GP and the lab, in my opinion.
Is your GP even aware that you have no thyroid or parathyroid glands? Because the behaviour of the doctor and the lab comments suggest they don't even know that.
i agree humanbean ~ for the reviewing GP to have instructed 'review in 3 months' for a patient with no thyroid and a TSH of 8 shows an appalling lack of 'knowing what they are doing' . Being left on current dose for another 3 months would result in patient becoming increasingly unwell.
(Endo doesn't sound much better to be honest .. they saw result of TSH of '3 something' and didn't suggest an increase in Levo despite patient feeling unwell.)
This looks to me like some GP in a hurry has just read the (inappropriate) lab comment and written '3 month review' without realising the patient has no thyroid.
'3 month review' might be an appropriate response if this was the first over range TSH in an undiagnosed patient .. but not when trying to titrate thyroid hormone replacement for someone without a thyroid who is feeling rotten .
thank you, thank you all for your reassuring comments cos I felt like I was overdramatising . Everyone just thinks I’m being miserable but I’m not I am actually unwell. Thank you all this site is really helping me educate my self
I know I went back into the doctors and said are you sure the doctor does not want to talk to me i have no thyroid I Shouldn’t have a high tsh 🙈 she said doctor can talk to me until next week. I have emailed my endo with the results and rung the secretary but not heard from anyone yet.
Complain. In writing - to Endo, GP, and lab. And ask for your letter to be kept with your medical records. Keep a copy yourself as well, obviously. Hand the letter into the surgery yourself, and put "Delivered by hand" on both letter and envelope.
If it is possible to deliver by hand to Endo and Lab then do that too.
Underline to endocrinologist the terrible B12 result
Request full iron panel test for anaemia including ferritin and vitamin D test too
Plus coeliac blood test
ok thank you so much
It occurred to me that I can say you should write a letter of complaint to X, Y, and Z. But away from the heat of the forum, it would be a good idea to be as diplomatic as you can be, while still getting your points across.
The medical profession always come across to me as people with big egos while also being delicate little flowers who can't cope with criticism. So, it wouldn't be a good idea to piss them off too much just in case they chuck you off their surgery register.
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