For comparison purposes, my previous NHS test results done at my GP surgery late February 2019, using the same ranges as used above [fasting, off supps but doneat 9.45am] were : TSH 4.04, FT4 13.4, TPO antibodies 15.
In the report accompanying the results the doctor advised the following:
“Your thyroid stimulating hormone is slightly raised. TSH values between 4 and 10 can be an early sign that someone is developing an underactive thyroid, and may be a sign that you have subclinical hypothyroidism if they are accompanied by symptoms. These include fatigue, weight gain, low mood, skin and hair problems. If you are experiencing these then I suggest discussing this result with your GP. If you are free of symptoms then you may prefer to simply retest in 3-6 months. Your thyroid hormones are normal as are your thyroid antibodies revealing no evidence of autoimmune thyroid disease. You have a decreased ferritin level which suggests that you are deficient in iron. I advise discussing this result with your doctor as you are likely to need further investigation to determine a cause, especially if you are experiencing any bleeding, weight loss, fatigue or bowel upset. Depending on the cause, you may also need iron replacement therapy. Additionally, as low iron can affect your red blood cells, I recommend checking your full blood count to ensure you are not anaemic.”
Unfortunately I ordered the wrong test [I found their site a bit confusing] and according to them I didn’t order the one which includes a test for vitamin D so there are no vitamin D results. In light of the test findings I am going to ask my GP to test for vitamin D.
I developed Fibromyalgia in 1993, although looking back recently it occurred to me that I have most likely had it from childhood, with a history of “growing pains” as a child, which would now be considered symptomatic and severe sciatica as an adolescent [also now considered to be symptomatic] and sleep dysfunction. I was diagnosed with ME/CFS in 2001. Over the course of the last 6 months and the last 6-8 weeks in particular my fatigue has worsened to a point where I would be considered non-functioning. I am almost completely house-bound, unable to function around the house and sleeping in excess of 12 hrs per night yet waking up exhausted and in pain as if someone had beaten me during the night. I have a lot of the classic hypo symptoms [brain fog, cold hands and feet, feeling cold all the time, hair loss, brittle nails, dry skin, low mood, starting to gain weight recently despite no change in eating habits, vertigo, skin problems, growing list of food intolerances and problems with digestion]. Every so often I get incidents of arrythmias. I recently had an episode where my blood pressure was extremely low and I was very dizzy and kept feeling like I might faint to the point that I was afraid to go to bed that night in case I didn’t wake up in the morning, and then in the days that followed that I was so fatigued that I struggled to keep my eyes open and had to keep blinking as if I was trying to open my eyes – like I wasn’t properly awake; the combination of pain and fatigue meant I couldn’t manage to get round the ground floor of my house or stand for any length of time. All of this means that the jobs are piling up and I feel constantly overwhelmed. I used to be capable, no amount of work was too hard, exercised every day, had a full life and then overnight all of that stopped 20 years ago. There is also a family history of thyroid disease – my mum is hypo [possibly Hashis but I doubt her GP has ever tested her antibodies] my sister has Hashis and 3 of my 4 cousins on my fathers side of the family are on Levo.
I apologise for the long winded post, but I thought if I provided some of the big picture detail then it might help anyone trying to analyse what my results might mean. I am due to see my GP next week so any advice would be greatly appreciated.
Many thanks
Redlester
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Redlester
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Your ferritin is EXTREMELY low. You will need full iron panel testing and very likely iron infusion. Certainly iron supplements
Eating liver or liver pate once a week, plus other iron rich foods like black pudding, prawns, spinach, pumpkin seeds and dark chocolate, plus daily vitamin C can help improve iron absorption
Vitamin C with each iron tablet can help improve iron absorption
Your TSh is above range and FT4 low....but your GP may still think TSH not high enough to start on Levothyroxine because you don't appear to have autoimmune thyroid disease as both antibodies are within range
However 20% of autoimmune thyroid patients never have raised antibodies. Emphasise your family history of hypothyroidism. Ask for ultrasound scan of thyroid
The ferritin result was a massive shock to me. I am not vegetarian and take vitamin C [ester] in divided doses 3 times per day with each meal. The week prior to the test I was feeling particularly ropey so I made a vat of chilli and just ate that for almost every evening meal [normally I would rotate proteins] I had also just had a period so I am wondering what influence these 2 things could have had on the ferritin result. The other thing that haunts me a bit is did I do the test correctly? I found it relatively easy to do, but worry that with hindsight I didn't wipe away enough of the first drop of blood - as in, the first drop I wiped away was quite small, compared to the very large later drops that followed it, so would there have been some of the first drop in my sample and would that have made any difference to the results? I will have to show these results to my GP so that she can consider the ferritin situation and ask for a D3 test. Unfortunately this will be the first time I have seen this GP so I don't know anything about her, but based on the others in the practice, she will just about able to diagnose an obvious case of primary hypothyroidism and no more. The GPs I have seen so far seem to think that FMS can be cured with a GF diet. I did GF for 3 years and didn't improve. If anything my condition has got progressively worse. I currently have zero quality of life. I am existing. I cannot go on like this much longer and am desperate for help. Should I ask my GP for a referral to an endo and if so, is there any particular endo I would need to see?
and am wondering could I have a case of "missed" hashimotos disease?? I have the symptoms of hypometabolism and the problems I have had have gone on for so long that I am wondering am I am case of a chronic problem where: "The antibody test is usually pretty conclusive and any level of thyroid antibodies will suggest an autoimmune process at work; although as noted above, as the damage becomes chronic the levels may lessen." Could this be what has happened to me, that my thyroid was always struggling, but antibodies were never tested until now, and my thyroid tests which were done came back as "normal" and so a dx of Hashis was always being missed? Is that why I am struggling with the ferritin folate etc?
I am struggling for answers at the moment. I saw my GP yesterday and showed her my test results and gave her an A4 page with my symptoms, my genetic history [considerable] and also showed her historic ferritin levels from 2016 showing a similar result of 10 [r 13-150] which my previous GP signed off as normal, because the other tests on the iron panel were within range. She has agreed to do more blood tests [possibly in the hope that the "private" results will be proved to be wrong] and left me in no doubt that she thinks that because of my age [52] the symptoms I have are caused by the menopause. I didn't discuss my dxs of FM and CFS/ME with her because those would have been easy default cop outs for her, but did have to stop myself from saying, "considering I have felt like this for the last 20 years and more it must be the longest case of 'menopause' on record." My next question would have been "how does menopause cause an elevated TSH?" She said she wouldn't consider treating me until my TSH was closer to 10. I tried to tell her how bad things were in terms of not being able to function but she just said she had had a lot of female patients who had gone through the menopause and found it very debilitating.
GP is doing iron panel as part of the bloods - last time around it was just ferritin that was low, the rest of the panel was ok. If that happens this time [low ferritin but rest of iron panel in normal range] then what could be causing the low ferritin both times?
I have already been tested for coeliac - blood test and biopsy taken on endoscopy came back negative. I can ask GP to do another blood test for that.
I would like to get thyroid ultrasound - can that be done on NHS? I saw consultant rheumatologist privately about 7 or 8 years ago and he asked my previous GP practice on several occasions to do thyroid ultrasound. They refused as "they didn't consider it necessary". I still have copies of his letters of request that he sent then could I produce those to my current GP to support my request ? [had I appreciated the significance of what he was saying I needed to have back then I would have kicked up a fuss as opposed to simply shrugging my shoulders as you tend to do when they say no to every request for tests you make as your illness, to them, is all in your head]
I know there is anecdotal evidence of that on the forum but is there anything I could take to my GP - any article or reference indicating that you can have hasis without elevated antibodies and that an ultrasound is diagnostic - it would be good to know in my case if I had it or not
T3 is the active thyroid hormone which controls the metabolism and therefore the symptoms. The Free T3 test is therefore the most accurate way to diagnose hypothyroidism. Your Free T3 is above the mid-point in the normal range, which would be good for most people and means that you are not hypothyroid. Your good Free T3 also shows that you do not have any issue with converting T4 to T3.
Your raised TSH probably shows that your body wants an even higher Free T3.
Your good Free T3 with your symptoms and family history is a strong indicator of a genetic condition: Impaired Sensitivity to Thyroid Hormone (more often known as Thyroid Hormone Resistance). It causes hypothyroid symptoms and requires very high T3 levels (often above the top of the normal range) in the body to overcome the resistance.
I'd disagree with HughH in the interpretation off your results. FreeT3 can vary in how useful it is to diagnose thyroid illness, because often the body will pull out every stop it can manage to keep freeT3 in a healthy state. Most people have healthy looking freeT3 on diagnosis. You can see this often in journal articles that sample a large group of recently diagnosed patients.
You're in that difficult position where your thyroid panel is clearly not right, but doctors are waiting for you to reach some arbitrary point before they diagnose. With a TSH of 6 you are eligible to get a diagnosis, but GPs make their own judgement call. Some will want it to be as high as 10, others will be happy to diagnose and treat you with it out of the reference range.
I think your best chance to getting diagnosed at the moment is to go round and try as many GPs as you can. If you're lucky you'll find one who will treat you, and having such awful symptoms should be an argument to treat even if they don feel sure.
You've also uncovered very low ferritin. I agree that you should go back to your GP and be tested for this. Iron deficiency is quite nasty, and its good news to find something like this. You'll hopefully get a big improvement when this is treated, and your thyroid needs all these things optimal to work properly, so you may get improvement in that, too.
TSH is not a thyroid hormone. It is produced by the pituitary gland and travels in the blood to the thyroid gland where it signals to the thyroid gland to produce more thyroid hormones. High TSH does not directly cause health problems.
Thyroxine (T4) is a thyroid hormone but is not an active hormone, it needs to be converted to T3 to become active.
T3 is the active thyroid hormone which controls the metabolism and therefore the health and symptoms. The Free T3 result is therefore the best way to see if someone is hypothyroid.
I agree with you about most of this. Once a person is on thyroid replacement treatment freeT3 will be the number that best reflects symptoms.
BUT a quirk of early thyroid failure is that the body will maintain freeT3 levels for as long as it can. On diagnosis many people will still have quite nice looking freeT3 levels, even though TSH and freeT4 are dire.
In this case, freeT3 often doesn't reflect symptoms, and people will still feel just as unwell.
diogenes and his team are uncovering some of the mechanism of this. I will see if I can dig up a paper for you.
Here's a paper discussed on the forum a few months ago. Its primarily about heat generation in the body, but it includes huge detail about the cohort of thyroid patients. We get to descriptive statistics of their thyroid panels throughout the study ( from diagnosis, to early treatment, to stable treatment).
This study used a TSH cutoff of 10 for entry to the study, but I was interested to see that the freeT3s were not that low. The median was 4.1 with a range of 2.6-5.6. This is only 0.5 away from the centre of the range! On the other hand, the freeT4 median is below the reference range, and some were much lower, but the range is wide. Some were far far below the range, and others seem to be mid-range or maybe even higher.
You can see a summary of these results for the cohort of 33 patients if you scroll down to Table 1 in the paper.
Thanks SilverAvocado for this interesting paper and I also appreciate your comments on it in the original post.
To me however the research is flawed in several ways. Doctors tend to only do TSH and Free T4 tests and use these for diagnosis. I can't understand why in this study, when they have Free T3 results they completely ignored them. Most of the people in the sample were not hypothyroid based on their Free T3 values.
I agree that the body will maintain freeT3 levels for as long as it can but while the Free T3 levels are good then there should not be severe hypothyroid symptoms. The only explanation I can come up with is that most of the people in the sample have thyroid hormone resistance - this would explain there high TSH and low Free T4, while still having good Free T3.
That's an interesting point that because people were diagnosed on TSH and freeT4 we'd expect to see relatively good freeT3 results. We see from other papers that there are people with relatively low freeT3 while TSH and freeT4 look in somewhat better shape who struggle to get diagnosed. I'm sure this is the case to some extent.
All we can really do is get an approximation of the shape of this illness, from many papers like this one (which I definitely agree has many flaws), and by looking at many many individual results on the forum.
Its quite common to see patterns like this on the forum, with well maintained freeT3, while the other thyroid panel numbers are bad. I've also noticed these posters seem to feel just as unwell as those who don't manage to maintain their freeT3, but that is entirely anecdotal!
I had not been going to post this as it is so obscure. Your post shows that perhaps there will be some interest.
UCP1 is uncoupling protein 1 (the first such to have been discovered). In essence, it can cause the release of heat in brown fat without the what we are familiar with - shivering.
Hyperthyroidism is associated with increased metabolism ("thyroid thermogenesis") and elevated body temperature, often referred to as hyperthermia. Uncoupling protein-1 (UCP1) is the protein responsible for nonshivering thermogenesis in brown adipose tissue. We here examine whether UCP1 is essential for thyroid thermogenesis.
METHODS:
We investigated the significance of UCP1 for thyroid thermogenesis by using UCP1-ablated (UCP1 KO) mice. To avoid confounding factors from cold-induced thermogenesis and to approach human conditions, the experiments were conducted at thermoneutrality, and to resemble conditions of endogenous release, thyroid hormone (thyroxine, T4) was injected peripherally.
RESULTS:
Both short-term and chronic thyroxine treatment led to a marked increase in metabolism that was largely UCP1-independent. Chronic thyroxine treatment led to a 1-2 °C increase in body temperature. This increase was also UCP1-independent and was maintained even at lower ambient temperatures. Thus, it was pyrexia, i.e. a defended increase in body temperature, not hyperthermia. In wildtype mice, chronic thyroxine treatment induced a large relative increase in the total amounts of UCP1 in the brown adipose tissue (practically no UCP1 in brite/beige adipose tissue), corresponding to an enhanced thermogenic response to norepinephrine injection. The increased UCP1 amount had minimal effects on thyroxine-induced thermogenesis and pyrexia.
CONCLUSIONS:
These results establish that thyroid thermogenesis is a UCP1-independent process. The fact that the increased metabolism coincides with elevated body temperature and thus with accelerated kinetics accentuates the unsolved issue of the molecular background for thyroid thermogenesis.
Looks very interesting, I will have a proper look later.
This jumped out at me: "Chronic thyroxine treatment"! If you wrote this up as fiction you just couldn't imagine some of the dehumanizing terms they use about us!!
Looks to me like you have an underactive thyroid as you have a raised TSH. Ignore this subclinical stuff. Anything over 2 in my opinion is dodgy. I found eating spinach daily helped raise my ferritin levels naturally. Convince the doctor to give you thyroxine. Could you have PCOS? Raised estrogen can cause lowered thyroid levels. I'm suggesting this as you don't have antibodies.
TSH is not a thyroid hormone. It is produced by the pituitary gland and travels in the blood to the thyroid gland where it signals to the thyroid gland to produce more thyroid hormones. High TSH does not directly cause health problems.
Thyroxine (T4) is a thyroid hormone but is not an active hormone, it needs to be converted to T3 to become active.
T3 is the active thyroid hormone which controls the metabolism and therefore the health and symptoms. The Free T3 result is therefore the best way to see if someone is hypothyroid.
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