Have previously posted and received great advice. I had my ultrasound on my thyroid and the doctor doing the scan advised me that I had nodules and should be referred to an Endo. My doctor has advised there is no concern and will not refer me. My TSH result in June was 4.15 range 0.30-3.94mlU/L. I was put on 25mcg Levothyroxine and in September after a heated argument was upped to 50mcg. However I still have all the same symptoms, if not worse and gained another Stone in weight. I have just had another blood test and now my TSH 1.55 but doctors have advised I am in limited and will not up meds any further. Awaiting Vit D results. I can't carry on the with feeling so ill, it's not only affecting my work but also my home life. Now should I fight again to up meds or do I wait for for Vit D results and take a larger dose? I want to go back armed with as much info as possible.
Help with results. : Have previously posted and... - Thyroid UK
Help with results.
Your TSH is nearly 2, so the doctor should increase dose. The aim is 1 or below. Unfortunately most believe false statements that a very low or suppressed TSH will give us heart attacks or some other nonsense so are wary.
If you email louise.roberts@thyroiduk.org.uk and ask for a copy of Dr Toft's online Pulse article highlight question 6 where he suggests how low TSH can be. Discuss this with doctor and Dr Toft was Presdident of the the British Thyrod Association before he retired.
Thank you, I have ecieved the report and will take.
Highlight the appropriate para and hope he reads and takes notice. Some just ignore it.
Thank you, it's a shame that some doctors go only by the blood results and do not take symptoms into consideration. They go on about lack of money but not dealing with the issue is only causing me to keep returning to the doctor, surely that is costing the NHS more money!
The pharmaceutical companies like it that way re hypo. They have managed to change the whole system by insisting levothyroxine was a 'perfect' replacement and that NDT was imperfect etc etc. (considering it was in use for more than 100 years and it would appear that people were stabilised on it and didn't die a horrible death which they used to.)
Doctors who carried on with the old method of symptoms and NDT were struck off or pursued so that they resigned when Levo became the only thing to be prescribed. They were told that only the TSH was the diagnosis - nothing about symptoms.
I have read that monetary exchanges were made to persuade doctors to prescribe levo instead of NDT (in USA) and the world gradually moved over to levothyroxine plus the blood tests.
The NHS bears the cost of prescribing the cheapest possible thyroid hormone replacements. Only diagnose when TSH is 10. Ignore all patients' clinical symptoms and are ignorant about them. Are willing to prescribe more prescriptions for disabling symptoms, pain, palps, depression etc etc. So NHS foots the bill: some people are incapable of working: are laid off: told they have a mental illness: that it's the result of their weight gain: It's all their own fault and they should stop complaining as TSH is 'normal'.
It's total madness, so many people having to suffer. I have been suffering for 12 years and prescribed anti depressants on many occasions. The last time I went i complained I put a stone on in weight since being on Levo and was offered diet pills, and if I bmi goes up 1 more I can have be considered for a gastric band! Of course I refused both. Thank goodness for this forum.
They do not realise that if a patient gains weight (it is a clinical symptom of hypo) it is their Fault not the patient's. Oh, blood pressure rising I think that they know absolutely nothing. 
If he offers you a gastric band - say ' I'd rather you prescribed some T3 for me instead'. (Before that get your FT4 and FT3 tested) I bet both are too low when they should be in the upper part of the range.
I have an appointment tomorrow and have printed off Tofts report. If I get no joy then I am going to send off for private testing. Fingers crossed.
shaws
Thank you so much for clarifying low TSH . Most Dr's don't know much or anything how to dose or read lab results .
That's why we have so many on this forum. Either not being diagnosed due to the TSH alone and ignorance of clinical symptoms by the medical profession. It is the symptoms which should be relieved - not taking more notice of the TSH.
I agree with you most definitely . That's why patients are joining forums like ours by the droves because they are not being treat by their Dr's satisfactorily and not feeling the way they should . OPTIMALLY !!! They come to seek help relief learn and get empowered to be able to navigate their thyroid journey . Dr's just don't get it . Patients do . They figured it out the hard way .
A very, very hard way for many members.
What a shame this day and age that patients need to struggle . There is NO REASON for it . MEDICAL ACADAMIA SHOULD HAVE SOLE SEARCHING AND WAKE UP . PATIENTS ARE STRUGLIG UNNECESSARALLY .
They will probably say that many thousands do fine on levo, but there has to be exceptions and 70,000+ on this forum isn't small. The majority are women but I feel sorry for the men as I doubt they've had experience about hormones going wonky before hypo.
If they can send men to the moon, why cannot they believe us when we say, I am not improving or I am far worse on this medication (when first diagnosed) and we have no notion what we are being prescribed or what it is supposed to do we just want to stop taking it.
For full evaluation you need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested
Just TSH tells you virtually nothing once we are on Thyroid hormone replacement
If you can't get full thyroid and vitamin testing from GP
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the article by emailing louise.roberts@thyroiduk.org print it and highlight question 6 to show your doctor.
Thank you, b12 due next week. Awaiting Vit D results, they were low last time. Going to the docs again on Monday and if I still get no help I think I am going to change docs. One of the doctors I saw told me to stop fixating on a problem that isn't there and tried to prescribe anti depressants!
They have absolutely no idea about thyroid and link to vitamins
If vitamin D, folate, ferritin and/or B12 are too low thyroid hormones can not work
Currently NHS medics learn virtually nothing about vitamins, gut and nutrition
Hashimoto's (and anyone on Levothyroxine) has to get to grips with poor gut function, low stomach acid and then poor conversion of T4 to T3
Your GP can not possibly determine if you are on correct replacement level by only looking at TSH. Essential to also test FT4 and FT3
Plus you need to know about antibodies
Post vitamin results once you have them. Members can advise. GP's very often prescribe too little supplements or none at all
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results
A TSH of 1.55 is possibly too high, especially if you have raised antibodies
Email Louise at a Thyroid UK for list of recommended thyroid specialists louise.roberts@thyroiduk.org.uk
I've been to the docs and they have agreed to up my Levo to 75mcg. My ferritin in 19 and the range starts at 30 and my Vit D is 42 but no range given. I questioned that both of these are too low and .asked for a print out but she said she was to busy and I will have to self prescribe for both of these.
Reply
I've been to the docs and they have agreed to up my Levo to 75mcg. My ferritin in 19 and the range starts at 30 and my Vit D is 42 but no range given. I questioned that both of these are too low and .asked for a print out but she said she was to busy and I will have to self prescribe for both of these.
I will link this to SeasideSusie
A ferritin level of 19 is significantly below range and GP is obliged to treat.
Suggest you make another appointment with different GP
Good that you had Levo increased
Yes, you will need to self treat vitamin D.
Suggest mouth spray vitamin D by Better You - trial and error how much you need. Suggest you try 3000iu strength. Retest after 2-3 months. Aiming for around 100nmol
Vitamindtest.org.uk - £28 postal kit
I see you have B12 injections, you could also supplement B12 sublingual lozenges, daily between injections, many on here do
Plus supplementing vitamin B complex helps keep all the vitamin B's in balance
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
Assume with nodules you have Hashimoto's. I see you have had negative results on TPO antibodies in the past, doesn't mean they are always negative
Over 20% wth Hashimoto's apparently never have raised antibodies
Suggest trying gluten free diet, it may help
Thank you SlowDragon, was just looking at sprays and was completely baffled at what one to order. Doctor did ask where I was getting my information after showing the Dr Toft report! When using a spray do you still have to use with a fatty meal or doesn't it matter as it will go straight into the blood stream?
I think it goes straight into blood stream. I use it 10-15 mins after breakfast
Better You now also do one with added Vitamin K2
Saves buying vitamin K2 separately.
Thank you so much for all your help,
hello SlowDragon, i have just brought the Vit d and k2 oral spray. As this us a spray does it still have to be taken 4 hours away from taking Levo?
I have to say I don't know, I suspect it doesn't matter as it's absorbed in mouth not gut
Personally I take Levo at night, on advice of endo about 8 years. Found it noticeably better, also more convenient
verywell.com/should-i-take-...
I take vitamin D about 10 minutes after breakfast.
Thank you.
Brownie
Don't bother asking a doctor for your results. Just go to the reception desk and ask there for a print out.
Ferritin 19 with a range starting at 30 requires further investigation. You need an iron panel and full blood count to see if you have iron deficiency anaemia, which low ferritin often suggests. To tell you to buy your own supplements for this level of ferritin and not do further investigation is negligent.
For this low level you need an iron infusion as tablets will take many, many months to raise your level.
You can also help raise your ferritin by eating liver once a week and including lots of iron rich foods in your diet.
Vit D is recommended to be 100-150nmol/L so at 42 you are a very long way off but you won't get a prescription off your GP because you are in range. You can buy your own D3 softgels (eg Doctors Best) or oral spray (eg Better You).
I would suggest 5000iu daily for 3 months then retest. Once you've reached the recommended level you'll need to find your maintenance dose, which may be 2000iu daily, maybe more or less.
When supplementing with D3 there are important cofactors needed vitamindcouncil.org/about-v...
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.
Magnesium helps D3 to work and comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds naturalnews.com/046401_magn...
Check out the other cofactors too.
K2-MK7 can be taken as a separate softgel or there are combined D3/K2-MK7 supplements. Better You also do a combined D3/K2-MK7 oral spray.
Thank you, I have PA. I have always been anaemic, so have always eaten iron rich food, just as well I like liver! If u get the spray does this have to be taken with a fatty meal?
hello SeaSideSusie, i have just brought the Vit d and k2 oral spray. As this us a spray does it still haven't to be taken 4 hours away from taking Levo?
I don't know as I've never used a spray, I think SlowDragon will be able to answer your question.
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