So further to my premature post yesterday I've received my thriva results now. (Highlighted results are from the GP.)
EVERYTHING is worse! Except T4. T3 is even lower than before I was diagnosed!
Admittedly I've been less militant with my supplements, and I did stop taking Vit D as a bit of an experiment because my level in Nov was so high, so I wanted to see how long it would last. Turns out, not long at all!
I've also attached my iron results, I'm not confident in my ability to interpret them so I'd appreciate some input there please.
So what vitamin supplements are you currently taking
Vitamin D has dropped significantly, but is still ok. But you wouldn’t want it to drop much more
Folate and B12 obviously need work
Presumably you stopped vitamin B complex week before test. Personally, in that week, I replace vitamin B complex with separate folate (Jarrow) and separate B12 (Jarrow) just for that week
Ferritin is your big problem to resolve
SeasideSusie or humanbean may pop along re what you may need to do to improve low levels
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Thorne Basic B is another option that contain folate, but is large capsule
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
With B12 result below 500, 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, then 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.
SeasideSusie or humanbean - I don't mean to pester (!) but I have a call with the GP tomorrow morning, first thing, and I don't want to look foolish and lose my credibility with him. Would you say those results suggest iron deficiency? I don't think they suggest anemia, do they?
Serum iron: 55 to 70% of the range, higher end for men - yours is 11.5%
Saturation: optimal is 35 to 45%, higher end for men - yours is 20% and at the very bottom of it's range
Total Iron Binding Capacity (TIBC) Low in range indicates lack of capacity for additional iron, High in range indicates body's need for supplemental iron - yours is 58.33% through range
UIBC - measures how much transferrin isn’t attached to iron. I have no information about what an optimal UIBC level is.
Ferritin: Low level virtually always indicates need for iron supplementation - yours is 1.46% through range.
I don't know at what levels iron deficiency is diagnosed; however, you can see that your serum iron, transferrin and ferritin are all very poor levels.
We know that you have been taking iron supplements and have said above "I've been less militant with my supplements". Exactly what iron supplements were you taking - iron tablets? If so were they prescribed?
By the look of your iron panel results I think I would be asking the GP for prescription iron tablets. Make sure that you are monitored regularly whilst taking them.
I'm genuinely perplexed, Scrumbler! Nothing is different.
I have no idea why they're worse. It's so disheartening but it does explain where my motivation went...
I'm so sorry but all I can do is repeat my post from last Sunday :
Vitamins, minerals and a good level of calories are necessary to build core strength and help optimise thyroid hormone replacement.
The accepted conversion ratio when on T4 - Levothyroxine only is 1 / 3.50 - 4.50 T3 / T4 with most people preferring come in at around 4 or under :
If I divide your T3 into your T4 I get 3.8 :
Your T4 is only just 50% through the range and think that when, with dose increases, you build up to being in the upper quadrant of the range you will also see proportionately, a higher T3.
It is T3 that gives you symptoms - too low a T3 and you have symptoms of hypothyroidism and too high a T3 and you can have symptoms of over medication and feel a little hyperactive.
Quite where in the range your T3 needs to be for you to feel well is the question we all ask ourselves but I can assure you with a higher T4 and a proportionately higher T3 + optimal vitamins and minerals you will feel much improved.
Obviously having Hashimoto's compounds your health issue further and you need to look at improving gut function and avoiding any foods that trigger your immune system which then attacks your thyroid and can causes an erratic, disabling production of thyroid hormones for a period of time.
With every attack from your immune system your thyroid becomes more disabled and overtime it will be necessary for you to increase your thyroid hormone replacement to compensate and make up for the failing gland.
Ultimately the thyroid dies and then you will be needing full thyroid hormone replacement, probably having to introduce a little T3 - synthetic Liothyronine alongside your T4 :
There is much more to read on the Thyroid uk website and people often refer to Dr Isabella Wentz who has the disease and has written extensively on this auto immune disease.
Serum iron: 55 to 70% of the range, higher end for men - yours is 11.5%
Saturation: optimal is 35 to 45%, higher end for men - yours is 20% and at the very bottom of it's range
Total Iron Binding Capacity (TIBC) Low in range indicates lack of capacity for additional iron, High in range indicates body's need for supplemental iron - yours is 58.33% through range
UIBC - measures how much transferrin isn’t attached to iron. I have no information about what an optimal UIBC level is.
Ferritin: Low level virtually always indicates need for iron supplementation - yours is 1.46% through range.
Supplementing iron pills should result in the following :
Serum iron should rise
Saturation should rise.
Ideally TIBC should stay roughly in the middle of the range, but may drop from its current level.
UIBC - I don't have an optimal level for this. In those circumstances I would suggest aiming for the middle of the range would be a good idea.
Ferritin : With the reference range you've given I would want a result of approx 82 - 120 or 82 - 130 i.e. mid-range or a little bit over.
To find out about the types of iron supplements that are available to you, you should read this reply to another member.
People can buy prescription-strength iron supplements without a prescription in pharmacies in the UK. I have always used ferrous fumarate 210mg. Maximum dose of this when trying to optimise iron and ferritin is one tablet three times a day. I also take ferrous fumarate to maintain my iron and ferritin levels where I want them once I got my levels as close to optimal as I could get. For that, after a lot of trial and error I've found that one tablet per day, for five days per week, works for me. I found this out over a long period of time. Ferrous fumarate comes in boxes of 84 tablets.
GP adamant my symptoms were nothing to do with thyroid because it's 'in range' and I'm only tired because we're in lockdown.
That's what doctors always say - "in range = normal".
And as for being tired because of lockdown, doctors have a long list of "reasons" for being tired, usually based on age or gender or responsibilities or job or the age of the patient's children or when their last pregnancy was, and they just throw out the one which is most convenient for them at the time. I hadn't realised that lockdown was a new addition to the list, but I really should have done.
You don't need a prescription in the UK to get prescription-strength iron supplements. They can be bought from pharmacies with the pharmacist's permission. If you get refused by one pharmacy, just go to another one and ask again. I've only been refused once, and that was by Boots. I normally buy my own iron pills from Tesco Pharmacies or Lloyds or a local independent pharmacy. Don't try and buy loads at one time.
The thing about iron is that it can be dangerous / poisonous when taken inappropriately, and the body doesn't have any means to get rid of excess, so it can build up in the tissues and make people feel very ill. Until you have an idea how quickly or slowly you absorb iron it is essential to test regularly.
But bear in mind that if you met someone who suffered from haemochromatosis (a genetic fault that means people absorb far more iron than normal) that doctors take no notice of the problem until ferritin comes back as 800 - 1000. So, it is one rule for the people who absorb too much iron and another rule for people who don't absorb enough.
None of the advice offered on this forum ever suggests that people supplement enough iron to get any of their iron-related levels outside of the reference range, and we stress the importance of optimal, rather than very high or very low levels of anything.
I was still trying to argue my case for an increase so was biting my tongue hard but I was quite close to telling him how patronising he was being.
I also tried to compromise and offered to have another blood test in 8 weeks to make sure I wasn't over replaced. "No." Was his stern reply.
When I asked why he wouldn't compromise he started to tell me about the risks of being overreplaced being osteoporosis and how I would end up having a stroke and I'd not be very happy then if I was paralysed down my left side.
I'm just so cross with him. The sheer arrogance of him.
And the feeling of helplessness when he's refusing me the thing that would make me well.
Tried to argue that I understood the risks but living like this is miserable. He didn't care. He was just keen in implying it was all in my head. *Insert strong swear word here.* 😂
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
New NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking levothyroxine
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)."
(That’s Ft3 at 58% minimum through range)
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor
please email Dionne at
tukadmin@thyroiduk.org
Suggest you print out and highlight relevant sections of all these links for GP
I've been drafting a letter in my head all day and I was going to come and look for all this information later this evening.
The current plan is to wait for bloods on Wednesday and when they come back 'in range' push hard for another increase either from him or another GP, with all those documents to hand.
If that fails there is a T3 friendly endo near me so I'm going to assume he won't disagree with the need for me to increase T4!
I think I've asked this before but lets for argument's sake say the private endo gives me a prescription. That means I have to pay for the prescription at the pharmacy, doesn't it?
Usually if you see a private endocrinologist and you need dose increase in levothyroxine they write to GP to increase dose and to advise (instruct) GP that all future thyroid tests should aim to keep TSH below 1 (or might even specify keeping TSH under 0.5)
Levothyroxine is cheap as chips
Anyone with TSH over 2, first step is to increase levothyroxine
Obviously if you eventually need T3 ..that’s trickier to get on NHS .....but not impossible
I didn't word that very well. Agree - at the moment T3 isn't a sensible idea. Am concentrating on vitamins and getting the right dose of levo!
Was thinking that if the endo is open to prescribing T3 then that would suggest he is open to the idea that 'in range TSH' isn't a good enough marker of optimal treatment.
If it's this hard to get T4 on the NHS I dread to think how hard it is to get T3.
My mother was on 75mcg Levo from the day she was diagnosed until the day she died, over 30 years later.
She had extremely severe osteoporosis - so bad in fact that although she needed new hips she was denied them because her bones weren't strong enough to support hip replacements. She also had multiple spinal fractures, and they never heal. Several years before she died she already had three, and I'm sure, given how much her back collapsed in the last few years of her life she must have had many more by the time she died.
My mother also had at least one (small) stroke, and there may have been more before the end.
So doctors claiming that keeping TSH in range (my mother's TSH was nearly 3) is all that is required to avoid osteoporosis and strokes are talking absolute rubbish.
I absolutely understand why the drs do as they do. They have guidelines and risk their livelihoods if they repeatedly breach them but the complete disregard for quality of life boggles my mind.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Results - is this why I have been feeling worse again?
Advice please, iron blood test results.
Help needed with test results, my GP is unhelpful!
Results
Test Results
