Hi, new member here who is fed up feeling so exhausted, achy and constantly feeling like I'm in slow motion (mentally and physically). Over the last 3 years all but 1 of my 6 blood tests show higher than normal TSH. Last test 6 wks ago 7.14. T4 has remained within normal levels, though always at the low end...last one being 11.8 (range should be 11.4 to 21.4).
Just had a private blood test and TPO at 127 and TG at 144 suggesting Hashimotos?
A year ago my GP told me TSH result wasn't enough to cause symptoms! Another appointment soon with a different GP. Should I be pushing for medication? I'm considering paying for a private consultation with an endocrinologist as other results are coming back as abnormal- Haemotocrit low and Mean Platelet volume high. Not sure if these are related and if I should be worried.
Sorry for long post. Thankyou
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Mishmash70
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Your doctor has no idea what he's talking about. You have Hashi's, and you are hypo and have been since your TSH hit 3. This subclinical c**p is just an excuse not to treat sick people in order to save money. It doesn't mean a thing. Ask him what the point of having a range is if they totally ignore it when it suits them. So, yes, you should be pushing for medication.
Seeing a private endo is a bit of a lottery. Most of them are NHS as well as private, so they only have the same rubbish NHS training which doesn't teach them much about thyroid. You need to thoroughly investigate your endo before spending your hard-earned money on him.
Thank you for responding greygoose. Just feel like I'm being a hypochondriac and not being heard by my previous GP. I've found a private endo that appears to have great reviews but may hold off, pending next GP appt.Think i should be pushing for a scan too as had issues with swallowing and feeling like a restriction in my throat which I read is also a symptom.
I don't suppose your GP is listening to you. He knows nothing about thyroid so tries to ignore it - like they all do. He knows he's totally out of his depth.
Who has writtne these great reviews this endo has? Unless it's people that actually know something about thyroid, they don't mean a thing.
Your thyroid could be swollen with Hashi's, so that could restrict your throat and affect swallowing and breahing. So, yes you do need a scan.
Yes, you should be pushing for treatment. Hopefully, this GP will be better.
There are NICE guidelines for treatment of what the medics term sub-clinical, and you fall within those as you have a) symptoms b) Hashi's antibodies :
"Treating subclinical hypothyroidism
1.5.2 When discussing whether or not to start treatment for subclinical hypothyroidism, take into account features that might suggest underlying thyroid disease, such as symptoms of hypothyroidism, previous radioactive iodine treatment or thyroid surgery, or raised levels of thyroid autoantibodies."
To fit the following you have to under 65yrs...........which is a complete nonsense and ageist in my opinion
"Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:
a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and
symptoms of hypothyroidism.
If symptoms do not improve after starting levothyroxine, re-measure TSH and if the level remains raised, adjust the dose. If symptoms persist when serum TSH is within the reference range, consider stopping levothyroxine and follow the recommendations on monitoring untreated subclinical hypothyroidism and monitoring after stopping treatment."
OMG nellie237. Thank you for this reference. I am glad I did not know this previously. I am 70 very shortly. Only just over a year on meds. It’s amazing they even bothered to treat me at all! It’s an outrageous piece of Sh1t.
Absolutely yes ….you need starting on levothyroxine if you have had 2 blood tests with TSH over 5, and high thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
Come back with new post once you get vitamin results
And update us on dose levothyroxine starting on
Avoid starting on Teva brand, unless lactose intolerant, as Teva upsets many people
Yes, last 2 have been over 5 and this time GP surgery contacted me to make an appt, so fingers crossed. The private blood test showed my folate is low but rest were OK. No coeliac test done so far though never had an signs of gluten issues before?Thank you for your help
So, seems all are on the lower side of ideal. If I take supplements will that affect my readings as my fear is the next blood test will show lower TSH levels giving GP excuse to not treat again.
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
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)
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
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
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.
once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3
Extremely difficult to maintain iron and ferritin on plant based diet
Plant based iron is non heme and much harder to absorb
We see high number of vegetarians on here, usually with very poor vitamin levels
I'm in Northamptonshire and the closest to Mr from the recommended list is Peterborough or Cambridge so don't know if anyone can confirm they are worth a try. Thanks again
I’m so sorry you’re going through this. I was there only a year ago! Now on meds and feeling much better. Sadly you are going to have to fight to get the meds, it seems to be the way it goes with the NHS.Tell your GP you are not happy and want to be referred to an endocrinologist. If they don’t do that, move surgeries.
I know how stressful all of this is. Hope you get it sorted soon x
This is good to hear...there is hope but seems you have to fight all the way (which isn't easy when you rubbish!) Glad you are feel so much better. Thank you
I am relatively new to this excellent forum. I have come to totally respect the information freely given on here. The specifics from the administrators, as well as the ‘rest of us’ mere observers at the moment. My experience of perhaps what might be ‘subclinical’/might not, is that I have had a heart condition (apparently untreatable but given too many failed medications to mention) which has almost miraculously disappeared after at least 25 years of severe pain, virtually immediately Levothyroxine was started. Unable to work, unable to pick my grandchildren up from school etc etc. Who am I to question that this condition has clearly been associated with undiagnosed OR sublclinical hypothyroidism? Unfortunately I am not yet ‘balanced’ in my meds and the many other hypothyroid symptoms need attention. I was advised to take specific supplements by our experienced administrators. No further testing as yet but I think that guidance has already borne fruit. You would be wise to attempt to circumvent/quietly challenge (if you are up to it) unnecessary time wasting and unnecessary suffering with the medical profession (like I unfortunately somehow, did not). You know your own body. Trust it and glean real help wherever you can. I can’t tell you what an excellent starting point this forum is!
Hey good luck with your GP, be firm and take all the guidelines with you. My results were slightly lower than yours but after months of battling I’m on the journey slowly titrating up the Levo medication. Have to say though the vitamin testing (I sent off privately for that) has made a massive difference. 2 months on D & B recommended here and some digestion supplements recommended from a book I’ve found helpful (Isabella Wentz) I’m much improved. Read up on hyper swings with Hashimoto’s, you might have the odd week where you feel amazing, that’s your thyroid flooding you after it’s been attacked these can really confuse a GP 🙈 as you’ll return to hypo after. Wishing you all the very best 👍🦋👍
I didn't know about hyper swings. It is weird how it fluctuates. Can't say I've had a swing but there's definitely times we're I've felt less exhausted, even to the point of thinking I can go for a gentle run (I haven't had the energy to exercise at all in the last year, coming from someone who previously ran 3 times a week). But I know I'd seriously suffer afterwards! Thank you
I hear you Mishmash, I have had twoTSH over 5 in the past months. Have thyroid antibodies, but not enough to be treated. The symptoms are awful, the no energy is particularly bad. Have most other symptoms as well. I feel we are just being left to suffer. Hope your GP listens and you get the treatment you so need soon.
I'm delighted to report there has been some progress. My last result showed TSH now 9.57 and T4 borderline so I'm actually booked in with a face to face appt with the GP (tho not until end of Sept!). The note on my online record says to recommend a trial of Thyroxine. I'm so relieved I could cry! I really hope you get heard soon as the symptoms are miserable. Not sure if you've seen the links in this thread but this one was really interesting and I used this during phone call with GP who said I was borderline (at that point TSH was at 7.14) and he agreed to do an antibodies test for me.
Yes I have seen the link. So pleased you are getting somewhere. When they said my antibodies and TSH weren't high enough to be treated I was crying buckets, so don't want to go on feeling rubbish. Again couldn't be more happy for you.
Hello again, not sure if i should start a new thread or update this one. But i have finally had a call from GP surgery to say they will start me on thyroxine but only 25 dose. I read on this forum that 50 is minimum starting dose! I'm 52, about 56 kg and my cholesterol also came back high for the first time (history of heart diseases on both sides of my family). Gp Surgery said they start low to guage for side effects.
I still have a face to face appt with GP next week but not sure if i should be pushing for 50? They also said they'd test for antibodies but i cant see that they have!
For reference, these were results of my private blood test (done late morning as didnt realise it had to be done early so tsh shows much lower level). Last test it was higher than ever at 9.57
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