I have had high levels of TSH (6.6) only show up on one blood test (for predicted hypothyroidism) after months of feeling really unwell and several blood test.
Elevated CRP is consistent on all blood tests I’ve had.
I have another blood test to check my TSH levels in a few weeks.
If I need a diagnosis for treatment, I would appreciate it ASAP so that I can get started on medication and start feeling better.
Why do GP’s ask you to wait 6 weeks to be re tested?
Is it worth me paying for a private advanced thyroid & antibody blood test with medichecks before then or would I be wasting my time and money?
Any suggestions appreciated? x
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sunshineisbetter
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It’s standard practice to repeat any thyroid test 6-8 weeks after first abnormal results. If hypothyroidism is confirmed then medication is almost always for rest of your life, so they want to check it’s definitely needed
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels and thyroid antibodies at next test if not been tested yet
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Thank you so so much for all of this information. You have no idea how much I appreciate it. Currently signed off work with stress for the first time ever in 14 years of a career and having reoccurring UTI symptoms despite infection never showing up in any sample sent away. My digestion is also dodgy! I’ve been referred for a kidney, bladder and ovary scan. I just want some answers to start feeling better ASAP x
CRP is consistently 9 each blood test which is borderline inflammation
The elavated CRP could be down to a 4 and a half stone weight gain in a year.
I’ve ordered the advanced thyroid test through medichecks to have blood taken at my local hospital.
Should I wait 6 weeks like the GP has recommmended (from last Friday) to carry out the medichecks test or can I get tested sooner to then take it to my GP to get the required results for a diagnosis/medication?
I have 2 young children that need their mum with energy back ASAP!
As tattybogle said .....GP won’t react much to TSH below 10.....but many people have terrible symptoms, yet TSH hasn’t risen much .....others are walking around relatively ok with TSH of over 50....or over 100
Just because TSH hasn’t risen much doesn’t rule out being pretty poorly
Likely to have high thyroid antibodies and low vitamin levels
About 90% of primary hypothyroidism is autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies
But 20% of Hashimoto’s patients never have high thyroid antibodies....so negative thyroid antibodies doesn’t rule out Hashimoto’s
When hypothyroid we frequently have low stomach acid, poor gut function, gluten intolerance and/or lactose intolerance. Poor gut function leads to poor nutrient absorption and Low vitamin levels as direct result
Low vitamin levels tend to lower TSH.
Improving low vitamin levels can significantly improve symptoms
Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.
Vitamin D insufficiency was associated with AITD and HT, especially overt hypothyroidism. Low serum vitamin D levels were independently associated with high serum TSH levels.
The thyroid hormone status would play a role in the maintenance of vitamin D sufficiency, and its immunomodulatory role would influence the presence of autoimmune thyroid disease. The positive correlation between free T4 and vitamin D concentrations suggests that adequate levothyroxine replacement in HT would be an essential factor in maintaining vitamin D at sufficient levels.
There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms
The current NHS NICE guidelines for diagnosis and treatment of thyroid disease suggest if considering treatment for 'sub-clinical' hypothyroidism... they should have "two over range TSH results 3 months apart + symptoms of hypothyroidism" and then GP's MAY CONSIDER trial of Levothyroxine, to see if it improves symptoms. Some don't make you wait this long ,....a few might be happy with 6/8 weeks , but any shorter than that could be misleading.
Having over-range thyroid auto-antibodies will help persuade them to treat if they are unsure... TPOab (thyroid peroxidase antibodies ).........GP's can test for these. If TPOab are over-range they indicate an increased probability that patient will eventually become 'overtly hypothyroid' at which point they would definitely treat with Levothyroxine.
.....raised TPOab's confirm an autoimmune cause for the destruction of the thyroid gland, which is progressive.
The reason for the long wait is to make sure that the over range TSH is not just temporary fluctuation, which could have many causes, and it would then return to normal on it's own once body had rebalanced itself , so it would be a serious mistake to interfere with this natural process and start Levothyroxine for life without ruling this out first.
TSH (Thyroid Stimulating Hormone) is a message from pituitary to thyroid asking for more or less thyroid hormones (T4 + T3 ) to be produced. TSH 10= more please /TSH 0 = enough already.
'sub-clinical' hypothyroidism- meaning TSH is over-range , but T4 is still in range.
'Overt' hypothyroidism - meaning TSH is over-range AND T4 is UNDER range.
'Auto-immune hypothyroidism'... GP's blanket term covering both Hashimoto's disease/Ord's disease (Hashimoto's has a goitre , Ord's doesn't.)
However , i can confirm from personal experience , that even though TSH of 6.6 is not very high at all from GP's perspective .. it is certainly high enough to fit with extreme difficulty managing any sort of normal life, i had 5.7 then 6.8 6 weeks later , and my T4 was still in range, but i was barely managing to keep up with cooking/ shopping/ washing-up and putting kids to bed... social life had gone out of the window , and work had started to involve being freezing cold , and staring at work with a blanket over me, and hoping to God no- one noticed that i'd made no real progress in 2 days, and then just sitting in the driving seat of the car when got home because the effort involved to getting my legs out of the car was like climbing a mountain... Fortunately my TPOab's were extremely high so Doc said "Oh ..." an prescribed Levo.
I suspect if they hadn't been so startlingly high i might have had a much longer wait while they still told me i was "probably just depressed " and i'd already been getting slowly worse for 4 years before i was diagnosed.
This was the list of symptoms I took to my GP before I knew anything about hypothyroidism. I missed off about the 4 and a half stone weight gain in 1 year but verbally shared that.
You 'shopping list' of symptoms made me smile.. i took one of them to my GP's once and they asked to keep it... i thought it was just to remind her later , but have since discovered it's been scanned into my medical notes..... including the part on the bottom that said "onions , Post office , Gas bill " !
some thing to consider.... even though some of those symptoms ( frequent urination . loose stools. higher temps) are more usually associated with Hyper (too much) thyroid rather than Hypo (not enough)thyroid and you recent results show TSH rising to ask for more ...
................If it turns out you have raised TPOab ....
......It is sometimes the case that in the early stages of autoimmune thyroid disease there are periods of too much thyroid hormone, ... when a bit of the thyroid is attacked by the immune system, that bit dumps it's T4 /3 into the blood . so you can get periods of Hyper symptoms, and even loose weight., but if you don't test bloods till several weeks later, you would miss seeing the high T4/3 levels in the blood , as the excess T4/3 would have been used up by then and the TSH can take a long time to react.
It is also the case that the symptoms of Hypo and Hyper can actually be very similar, and hard to tell apart , even for those of us who are used to them ... how our bodies react to thyroid hormone imbalance is very individual.
Thyroid symptoms are notoriously difficult to interpret, they can mislead us all ... hence having blood test's , but they too can mislead , so you need to look at the whole picture , and look over quite a long period of time,.. every thing about thyroid hormones is slow.
Which is really annoying because we want an answer to why we're broken, and we want it fixing quickly. And our life seems to be falling to pieces before our eyes and the doctor seems to just pat you on the head and say " well, we all get a bit tired" and you want to smash the chair over his head to make him listen , but you're too exhausted to even take your coat off.
But you need to prepare yourself ... if it is thyroid disease causing your current hypothyroid blood results, then even once thyroid hormone is prescribed it can take many weeks to feel better and there will be ups and downs along the way until you find the right dose.
Don't want to be depressing, just trying to be honest. Sometimes Doctors just say "take this little white pill and you'll be fine in a couple of weeks" ... and for some lucky people that is true, but for most of us its more like "Two steps forward , One step back" for the first few months.
Extremely common for Hashimoto’s to start with transient weeks/months of being mildly hyperthyroid ....weight loss included. As thyroid is initially attacked and cells break down, there’s increased levels of thyroid hormones loose in blood. The longer the attacks go on, the more thyroid is destroyed and increasingly hypothyroid we become
Early stage Hashimoto’s can often be misdiagnosed as Graves’ disease if blood tests happen to catch a temporary transient hyperthyroid phase.
Autoimmune disease often runs in families, so if your sister has Graves’ disease, also autoimmune, this also points to the cause of your symptoms being autoimmune disease
Thank you. I have learnt a lot today....my brain aches from the science and reading! I will update you with my medichecks and vitamin blood test results when I get them. That’s unless I think of any more questions before then!
I really appreciate you sharing your personal experience.
Same thing happened to me about 5/6 months after 2nd baby.. breast feeding , eating loads.... became skinnier than i'd ever been, even thighs ! loads of energy.. (with hindsight there was also quite a lot of shouting and being a bit mental... including hiding from everyone at my own birthday party till they all went away) No one thought to check thyroid at that point , but over the next couple of yrs, i just got slower, and more exhausted, until eventually it was checked and TSH was 5.7 then 6.8 and Antibodies were through the roof. I now assume this was a 'hyper' type phase before going hypo. I also have an aunt who went hyper and had a partial thyroidectomy , and then had to be on Levothyroxine.
So when we put your experience last year together with the family history of dodgy thyroids.. i think all the clues are pointing to Autoimmune thyroid disease for you too.
On a brighter note ... you have done well to find your way here at this early stage, and hopefully this will save you from some of the pitfalls i encountered over the last 20yrs.
I really wish i'd had other 'thyroid' people to talk to and get information from in 2003.
I would have known what to try when Levo only got me 75% better, and wouldn't have thought i was just not trying/ being a hypochondriac when Doctors said "it was fixed now"
And i would have understood that thyroid hormones are needed by nearly every cell of your body, including your brain, so i might have been a lot kinder to myself, and looked after my nutrition better, and put more emphasis on keeping a balance between work / family /social life.
Your kids will still do alright, honest , mine did despite my many shortcomings... it's your own sanity and confidence that can suffer if you don't understand what's happening to you, but once you do it's easier to be a happy parent , and they need that more than anything else.
don't get freaked out reading our stories on here.. many people are just fine once they are on the right dose of Levo.. and they are out ,running around after kids, having a life, not answering questions on thyroid forums... this place is a collection point for the 15% or so of us who had ongoing problems with it.. so lets hope if you do need Levo , you are in the other 85%
P.s
My Aunty was just fine on Levo.. lived till 78 and spent most of it running round the world , living in mud huts in Papua New Guinea, and Kenya, and the last 30 yrs being a sheep farmer.. She only sold the sheep cos she had a stroke at 76.
Ah thank you so much for sharing personal experience!
I kind of broke emotionally first unexpectedly from nowhere which is what initially led me to this point but despite being off with stress for the last 6 months, I’ve continued to worsen after 13/14 energetic years of teaching. I feel completely burnt out. It’s almost totally out of character but I’ve always had phases of exhaustion. I really miss working but there is just no way that I could ‘keep up’ at the moment. I just want to slowly get back to my old self! I’m determined to.
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