You may or may not recall I had some bloods carried out privately. The doctor wasn’t keen on them so order these. Luckily my endo accepted blue horizons tests and upped my levo to 100mg anyway. That was two weeks ago however I have waited on adding any vits etc until I got these back. Haven’t heard from the doctor as obviously all in range but I wondered if I could ask advice about iron mainly. My iron stores seem ok but I wondered whether my intermittent breathlessness could be connected still as ferritin is low but transferrin seems on the higher end? Or do I have to accept it’s anxiety? Maybe caused by thyroid still or even menopause? Out of everything I seem to suffer from it’s this I hate. Anyway has anyone any ideas? It would be much appreciated.
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That is very helpful. Thank you! Sorry for the photo. I will try and improve it.
Vit d2 and 3 are on there. They are 53 (range 50 -200). I’m assuming this is vitamin d entire? I admit I hadn’t educated myself on vitamin d. My b12 was only done by BH and was classed as insufficient at 278. I knew I needed to supplement but I did think the gp might prescribe but obviously as they’re within range they won’t.
It’s interesting to read your comments on ferritin. I hadn’t realised that you could feel breathless even if your iron stores are ok. I did some reading and it’s confusing me but I got the gist of it still being an issue if your body was utilising it properly. Trouble is with brain not in gear I have to read these things several times to absorb it!!
I actually did read that post the other day now I recall. I am pretty mind baffled by it all to be honest. I think my body just isn’t working efficiently and I need to serious take stock and supplement. I’m not going to do iron at the moment after reading the post you linked again. I have high ggt that I have to see a gastro for every six months. No I don’t really drink even though they ask me every time 🙄. I have more bloods for that in January/feb so I think I’ll sort myself out and see what they come back as in January/February. Hopefully the levo will be working better by then too. 🤞🏻🤞🏻🤞🏻
Thank you so much for the replies. I know you understand the frustration from feeling crap combined with banging your head against the surgery brick wall and that really does help 😊 so thank you.
Your thyroid hormone replacement will not work well if ferritin stays this low :
Asda sell little tubs of frozen chicken livers - they are very clean and mild to taste :
1 tub a week defrosted and flash fried down in a little olive oil takes no more than 10 minutes. I then blitz it down into a pate and store in jam jar in the fridge.
A spoonful of this medicine goes down most days, not with sugar, I hasten to add but a dollop of mayo !!!
Ferritin takes ages to increase through natural means :
I was prescribed tablets when my ferritin came in at 22 - I didn't know about all the other iron results, and only got the prescription as I stated thyroid hormone uptake is improved when ferritin is up and over 70/80 in the range.
Ok then. Chicken liver it is. I still have scope to add to my iron from those results if it does that to me. I just don’t want to go ‘bam’ to my body. One extreme to the other. As you have said that and reading other posts this evening etc I think it’s probably the first thing I should do totalling contradicting my last reply! Sometimes my head feels like a plate of spaghetti and I wonder how I actually got to be my age 🤣
That was soooo interesting Slowdragon. Funnily enough I was just on the Nice website and I very much appreciated that link. I must say though it has made me think that there was no blood count so how do they work out all the levels without putting that down? Am I being particularly clueless? I am aware that my blood count has been raised slightly over the last few years. My endo requested a referral to haematology but gp refused. Just made me wonder, my issues aside, how do they know to intpret these results if they don’t know all the info? Especially in a case of non iron deficient anaemia 🤔 I can see another day of reading tomorrow.
TIBC 88 (45 - 81) --- Over the range. Optimal = mid-range i.e. approx 63
Transferrin 3.5 ( 2 - 3.6) --- 94% of the way through the range. Optimal = mid-rangei.e. 2.8
Serum iron 25.1 (5.8 - 34.5) --- 67.25% of the way through the range. Optimal = 55% to 70% of the way through the range i.e. approx 21.6 - 25.9
Ferritin 14 (13 - 150) --- Optimal = roughly mid-range or a bit over i.e. approx 81 - 120 (ish)
Your transferrin saturation, TIBC, transferrin and ferritin all suggest you need more iron. Your serum iron suggests that you already have optimal serum iron, possibly even a smidgen too much for a woman.
With this combination of results it is difficult to know what to do, and nobody can predict what will happen if you supplement, so you will have to experiment and test. See this post and read all the replies :
1) If you start taking iron supplements, and your iron results react to supplementation in an ideal fashion, then your serum iron will stay roughly optimal, your ferritin and transferrin saturation will rise, and your transferrin will drop.
2) If you start taking iron supplements and your iron results react in the wrong way there is a possibility your serum iron could shoot up, leaving your ferritin at rock bottom. This could result in iron poisoning while still being iron deficient (this sounds mad I know), which means that you could end up with symptoms similar to those of haemochromatosis - definitely something to be avoided.
I think you should supplement for 4 - 6 weeks then get an iron panel done, then post your results in a new thread. Don't supplement longer than that without retesting.
For info on how to supplement iron, read this reply I wrote for someone else. My post is at the very end of the thread :
If I assume you weigh 10 stone (140 lbs) and that you don't currently supplement, then using the calculator I get the following results but obviously you should enter the correct information for you :
All suggested intake amounts are based on a weight of 140 lbs
Maintenance Dose
To achieve the desired serum level within approximately 3 months, a supplementation amount of
3,000 IU* (75 mcg) per day (this includes your current intake amount)
will be sufficient for 50% of people to achieve the desired serum level of 100 nmol/L
or
4,000 IU* (100 mcg) per day (this includes your current intake amount)
will be sufficient for 90% of people to achieve the desired serum level of 100 nmol/L.
Loading Dose
To quickly achieve the desired serum level within days†, a dose of
25,000 IU (625 mcg) per day can be taken for 5 days, followed by the above maintenance dose.
*Values rounded to the nearest 1,000 IU and are capped at a maximum of 10,000 IU/day.
†This calculation is based on published data by van Groningen et al., Eur J Endocrinol., 2010
Hundreds of peer-reviewed scientific studies have documented the well-established safety of single 'loading' doses of vitamin D to get levels up quickly (1-26). Loading doses ranging from 100,000 IU to 600,000 IU have been shown to rapidly increase vitamin D levels, but fail to sustain levels longer than 2-3 months. Larger doses induce more rapid breakdown of vitamin D (1-2). Therefore, the customized loading dose has been divided into doses of 25,000 IU over a number of days to achieve the initial increase in vitamin D levels. The maintenance dose is your custom daily dose recommended to achieve and sustain the desired levels of vitamin D.
but be aware that the link is written mostly with a US audience in mind rather than the UK and most doctors in the UK will prescribe Vitamin D3 if they prescribe at all.
Vitamin D3 supplements are easily found on supplement sites and Amazon in many different dose sizes. Shop around. The best supplements are capsules with some kind of edible oil in plus vitamin D3. Avoid tablets.
.
Taking vitamin D supplements increases the amount of calcium that is absorbed from your diet. Calcium needs to go into your bones and teeth, you don't want it to end up lining your arteries. To achieve that you need a couple of co-factors which are magnesium and vitamin K2.
SeasideSusie has written about magnesium and vitamin K2 many times. You can find her replies to others on the subject here :
Well. I have now finished work and sat to read your reply. I am astonished at your knowledge and cannot express how I appreciate you taking the time to be so very helpful. Such an informative read and the links too!! Please accept my sincere thanks.
I have read and will now go back and read again. I had thought I would research into anaemia of different kinds not just iron deficient today but I think your post with all its guidance is much more important to me at the moment. I will then be able to go and check out the best supplements and hopefully get on the road to improved well being.
I was glad to read your highly informative post on iron and I certainly take your point on blood count. You definitely answered my earlier question about how they can tell without one. So thanks for that. Very interesting.
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
Oh yes I recall this but my reply to you was on another post as I was just wondering if you had a tsh of 1 (as in the member on the other post) whether another 25mcg would actually suppress the tsh completely in most cases - if you knew or had experience of that. I was trying to work out from what I had read on here etc if she would benefit from t3 instead. I realise that’s a big ask from nhs in itself. Then I noted that the poster had been supplementing and can’t be sure of time of test or fast. Just interested that’s all. Sorry if I’m confusing posts.
Have low vitamin levels reduces TSH .....that’s why it’s so important to get vitamins optimal
Plus you have Hashimoto’s, so TSH is almost always very unreliable
As Levels hop about so much all the time
Are you on strictly gluten free diet?
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
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
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
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.
When adequately treated, TSH will almost always be under one, frequently much lower
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
Interestingly, patients with a serum TSH below the reference range, but not suppressed (0.04–0.4 mU/liter), had no increased risk of cardiovascular disease, dysrhythmias, or fractures.
It is unfortunate that we did not have access to serum free T4 concentrations in these patients to ascertain whether they were above or within the laboratory reference range.
However, our data indicate that it may be safe for patients to be on a dose of T4 that results in a low serum TSH concentration, as long as it is not suppressed at less than 0.03 mU/liter.
Many patients report that they prefer such T4 doses (9, 10). Figure 2 indicates that the best outcomes appear to be associated with having a TSH within the lower end of the reference range.
There is some concern that administering thyroxine in a dose which suppresses serum TSH may provoke significant cardiovascular problems, including abnormal ventricular diastolic relaxation, a reduced exercise capacity, an increase in mean basal heart rate, and atrial premature contractions.
12 Apart from an increase in left ventricular mass index within the normal range, these observations have not been verified.
13 Moreover, there is no evidence, despite the findings of the Framingham study, that a suppressed serum TSH concentration in a patient taking thyroxine in whom serum T3 is unequivocally normal is a risk factor for atrial fibrillation.
In summary, patients on long-term T4 with either an increased serum TSH (>4 mU/liter) or a suppressed TSH (<0.03 mU/liter) have an increased risk of cardiovascular disease, dysrhythmias, and fractures when compared with patients with a TSH within the laboratory reference range. Patients with a low, but not suppressed, TSH (0.04–0.4 mU/liter) had no increased risk of these outcomes in this study.
Obviously the experience of thousands of patients is that in order to feel well, on high enough dose levothyroxine, or especially if on levothyroxine plus T3, their TSH will often be much lower that their GP is “happy to allow”.
In this case, if TSH remains lower than GP will permit you may need to see thyroid specialist endocrinologist
Hashimoto’s frequently has some degree of central hypothyroidism, where the TSH does not respond correctly to low thyroid levels.
Often wearing a Fitbit or equivalent device that records resting heart rate and activity levels can be extremely helpful in persuading medics you are not over medicated
Even if TSH drops initially on increase in levothyroxine, it frequently slowly rises over coming weeks/months as your metabolism slowly responds to increased availability of the amount of thyroid hormones
Important to do some regular daily exercise to push the metabolism to improve.
Obviously if extremely under medicated that may only be 5-50 slows steps around the house.
As dose levothyroxine is increased, exercise tolerance should hopefully increase, perhaps managing a walk for 10-30 mins daily or twice daily
Eventually a return to more normal energy levels should be possible.....though likely to always need to pace yourself to some extent ....probably not going to be running a marathon
Oh right. I thought that high vitamins was for getting medication to work well mainly. I didn’t understand.
If the other poster had low vits ... I get your point now. Thanks.
I’m not coeliac has I had a biopsy a few years ago but did note the benefit from a gluten free diet. I also spent a long time on a low carb diet and did improve. Went vegan for a while but that made everything worse.
I found low carb easier to maintain long term than vegan. I think vegan requires a serious amount of supplementing if your not a foodie and eat to live like me. However you can’t supplement staying power with any diet unfortunately! I will look into gluten free again. I did do that when kids were young for quite sometime. I read it takes time for the stomach to heal for coeliacs so improvements can be delayed but thyroid sufferers of gluten intolerance feel it’s beneficial early on so one to seriously consider 👍🏻👍🏻
That is so informative. Thank you. I have joined thyroiduk this evening and requested the private doctor list as I imagine I will need to. I have a new gp and spoken once to her. She was flippant. She and I will not being having a lot to do with each other.
Your reply and links are really excellent - thank you again. Very grateful.
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So confused by my blood results.
Blood test ok? Some advice on this please (new member)
Pls can someone help shed some light on my recent blood tests?
Docs want to reduce my T4 Levothyroxine. Are they right to do so?
