Hello all! I posted here almost two weeks ago, and was advised to get test results then post them. I just got them back. Apparently my thyroid range is 'normal' and healthy but I am a bit skeptical. My symptoms still indicate a thyroid issue. (For example, it's June now..... Still so cold I'm using a hot water bottle! My hands were so cold trying to do the thyroid at home test that even after using 3 lancets, I couldn't collect enough blood due to my hands being so cold, despite soaking in warm water)
Here are my results,
TSH 1.51 mu/L (normal range 0.27-4.2)
FT4 12.2 pmol/L (normal range 12 - 22)
FT3 4.6 pmol/L (normal range 3.1 - 6.8)
Thyroid peroxidase antibodies: < 9.0 iu/ml (normal range 0-34)
I'm still confused and concerned as to why my FT4 is so low? Its literally on the border. I've had thyroid tests pretty much once a year for the past 4 years, and every single time my FT4 is on the lowest it can be for the healthy range (except one year it was below!)
Does this mean anything? Should I be concerned?
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every single time my FT4 is on the lowest it can be for the healthy range (except one year it was below!)
In my opinion, bearing in mind that I am not medically trained and I am not diagnosing, what could possibly be indicated here is Central Hypothyroidism. This is where the problem lies with the hypothalamus or the pituitary rather than a problem with the thyroid gland. With Central Hypothyroidism the TSH can be low, normal or slightly raised, and the FT4 will be low/below range.
TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone). If there is enough hormone then there's no need for the pituitary to send the message to the thyroid so TSH remains low.
In Primary Hypothyroidism, which is where the thyroid fails, the TSH will be high.
However, with Central Hypothyroidism the signal isn't getting through for whatever reason so the message isn't getting through to the thyroid to produce hormone, hence low FT4. It could be due to a problem with the pituitary (Secondary Hypothyroidism) or the hypothalamus (Tertiary Hypothyroidism).
As Central Hypothyroidism isn't as common as Primary Hypothyroidism it's likely that your GP hasn't come across it before.
Your GP can look at BMJ Best Practice for information - here is something you can read without needing to be subscribed:
You could do some more research, print out anything that may help and show your GP.
You may need to be referred to an endocrinologist. If so then please make absolutely sure that it is a thyroid specialist that you see. Most endos are diabetes specialists and know little about the thyroid gland (they like to think they do and very often end up making us much more unwell that we were before seeing them). You can email ThyroidUK at
tukadmin@thyroiduk.org
for the list of thyroid friendly endos. Then ask on the forum for feedback on any that you can get to. Then if your GP refers you, make sure it is to one recommended here. It's no guarantee that they will understand Central Hypothyroidism but it's better than seeing a diabetes specialist. You could also ask on the forum if anyone has been successful in getting a diagnosis of Central Hypothyroidism, possibly in your area which you'll have to mention of course.
Thank you for your detailed response! I am increasingly worried my issues are pituarity related. But I feel my doctor won't take me seriously. I've already asked to see an endo and he told me no because my thyroid levels are healthy, so they wouldn't accept the referral. Should I ask again? What should I do if he denies it again?
Use the information in the links I have given you above, pointing out that your thyroid results fit the criteria and that you have symptoms of hypothyroidism.
I haven't got the money to afford all those tests. I know for a fact my vitamin D and b12 is fine, my ferritin was 32 before I started supplementing iron, I take 14-28mg a day.
Vitamin D at least over 80nmol and around 100nmol maybe better
Serum B12 at least over 500
Active B12 at least over 70 (private testing)
Folate and ferritin at least half way through range
So that Ferritin at least over 70
humanbean explained in previous post that your iron supplement wasn’t very high and may not be improving low ferritin levels
Extremely difficult to maintain optimal iron and ferritin on plant based diet
If GP prescribed iron supplements they should retest and re prescribe until iron and ferritin are improved. But they frequently stop prescription too soon
Last time I had vit D tested it was 75 nmol/L, but I'm finding it hard to keep supplementing it as a decent strength vit D (2000ug +) is a lot of money. 'Normal range' for my GP is 50-120 so they won't prescribe me anything.
My b12 last time i had it done was 365 ng/L, normal range for my surgery 197 - 771. Why is over 500 best? Folate 8.0ug
However in 2019 my b12 was 826 ng/L, which is when I was supplementing b12. My doctor told me that was too high so I stopped supplementing as much (I also eat a LOT of marmite..). I now supplement b12 every couple of days.
I'm aware of the lack of iodine in plant based diets, however I tried to supplement iodine in the form of algae last year for a few months. It made no difference in how I felt so I stopped as I didn't want to take too much
At the moment, daily I supplement iron, magnesium, omega 3/6. Every few days ill have a multivitamin and a b12/B vitamin mix
My GP has never prescribed iron tablets, even when my ferritin was 10 a few years ago
clancymedicalgroup.com/vita...The medical field in Japan and Europe considers a patient to have vitamin B12 deficiency if testing reveals levels below 500 pg/mL to 550 pg/mL.
As a matter of fact, Japan raised its B12 reference range to 500 – 1300 Pmol in 1980s.
Suggest you consider a daily vitamin B complex ….might need separate B12 if levels don’t get over 500
Thorne Basic B or Jarrow B Right are recommended options that contains folate, but both 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
It is easy to maintain serum ferritin and iron levels on plant-based diets, though. Serum ferritin levels can be relatively lower, but this can be considered advantageous, because high serum ferritin levels are associated with development of metabolic syndrome. Also, non-heme iron from plant foods is absorbed more effectively than heme iron.
Non-heme iron from plant foods is less bioavailable compared to heme iron…..
…..The findings of this review showed that vegetarians have a high prevalence of depleted iron stores, indicative by ferritin values below specified cutoffs. In most cases, the used cutoff values were below the WHO’s criteria for iron depletion (ferritin <15 µg/L).24 Vegetarians also have a higher risk for developing low iron stores, iron depletion, and associated iron deficiency anemia, compared to nonvegetarians. These findings are consistent with a conclusion made by the authors of the Institute of Medicine’s report on iron, who stated, “Serum ferritin concentrations have been observed to be markedly lower in vegetarian men, women, and children than in those consuming a nonvegetarian diet.”5……. vegetarian women had a considerable higher prevalence of anemia (Hb <120 g/L).12,13,17,19 Thus, iron is rightly considered a nutrient of concern for vegetarians. This is especially true for premenopausal vegetarian women.
Heme iron is better absorbed by the body than non-heme iron. Certain factors can improve or inhibit the absorption of non-heme iron. Vitamin C and heme iron taken at the same meal can improve the absorption of non-heme iron.
blog.insidetracker.com/pump...Heme iron is typically absorbed at a higher rate than non-heme iron, which means that the body more easily absorbs iron from animal products than iron derived from plant foods. If you’re a vegetarian, keep in mind that the absorption rate of the heme iron from animal-based sources ranges from 15-35 percent, compared to 2-20 percent absorption of non-heme iron. Therefore, vegetarians may need to consume twice as much dietary iron as meat-eaters to absorb an adequate amount of iron each day.
In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency
Look at increasing iron rich foods in diet
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
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
I am vegan. Have since started supplementing iron since getting my 32 ferritin last year, all hair has grown back since supplementing so I'm assuming ferritin is probably around 50 now. My doctor won't retest because in his eyes, the 32 ferritin is healthy and normal.
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
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.
This can help keep all B vitamins in balance and will help improve B12 levels too
Thorne Basic B or Jarrow B Right are recommended options that contains folate, but both 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
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.
But as vegetarian or vegan likely to need ongoing separate B12 as well as vitamin B complex indefinitely
Answered a lot of these questions in my other response!
Important to mention, I've been vegan almost 2 years, but vegetarian for 4 years before that. However, my symptoms which indicate a thyroid issue started BEFORE I became vegetarian. I've had my issues for 7 years now.
Click on "Read the list of available tests" and on page 3 of the pdf you'll see
Urine Iodine Test:
Specimen requirements: Urine
Cost: £71.00
Order Code: END25
Turnaround time: 5 - 10 days
Iodine is an essential trace element, vital for healthy thyroid function. Adequate levels are required to enable the production of T3 and T4 thyroid hormones, whilst also being required in other areas of health.
Deficiencies can lead to impaired heat and energy production, mental function and slow metabolism. Urine iodine is one of the best measures of iodine status. This test is not performed as a loading test, but can be used to establish existing levels or to monitor iodine supplementation.
Glad your hair has grown back with supplementing. As SlowDragon says I'm vegan also and had ferritin levels similar to yours. My hair has stopped falling out as much but I've not repeated the test to check levels yet.
I was told to not supplement with iodine as I could complicate my situation futher.
This I find a bit confusing as I just want to feel well or at least better than I do now.
They still haven't prescribed me thyroxine I think they want to fully rule out any pituitary issues but it's taking a long time. I'm hoping once I get levo that will raise my FT4 levels.
The consultant is ringing me next week so I'll discuss it with him again just to confirm.
I’m sorry you are suffering a bit at present, plenty of empathy and hope you pick up soon. I’ve got the electric blanket on for my feet today as got cold walking about. Took my Levo at 5.30 am and went back to sleep. Woke up with pins and needles all over and icy patches and sore tongue and knew that was an indication of how the day might go. I’m sure others will advise on your “numbers”.
I'm still going through the process of getting a possible diagnosis but it's been a battle with my gp to take my symptoms seriously. Similar to you with a low and now below range FT4.
Yes I have an iodine deficiency and being honest I neglected the importance of iodine in my diet. The focus as a vegan for me was on B12 levels and trying to make sure I supplemented.
It took a bit of doing but am now seeing an NHS endo and also ENT (ear, nose throat) surgeon as on ultrasound I was found to have a nodule 3cms+ so been recently diagnosed with multinodular goitre as I have other small nodules also.
My FT4 has been low for at least 15years possibly longer as that's as far as my online gp records go back. But I suspect I've possibly had hypothyroidism since I was a teenager (now 50+) Any symptoms or problems I've had have always been explained away by the gp and blamed on my mental ill health.
I've been plant based since a teenager. Also I was diagnosed with mental health problems at an early age and many of the symptoms of hypothyroidism overlap. So it's a bit 'chicken and egg' 🤔 as I don't know if one's made the other worse.
If your GP is sympathetic I'd try and discuss with them your low FT4 levels. I'm still undergoing pituitary tests but no other diagnosis yet.
Sorry to hear of your struggles! It seems all GPs in England are absolutely useless at their jobs. Atleasr that's how I feel lately. My GP is definitely NOT sympathetic, I tried to talk to him a little while ago about looking down other avenues, as I've been diagnosed with CFS however I've not seen any specialist at all in any area. I asked him to see a neurologist, an endo, and a Rheumatologist, he denied all of them. I pointed out my low ft4 levels and he seemed uninterested. He told me to stop 'chasing an answer' and just to focus on my hobbies/career.... (which is rich, seeing as my symptoms get in the way of my focusing on those!)
My symptoms are an endless, endless list. But mostly I have fatigue, brain fog, muscle pains, very sensitive to temperatures (I had a hot water bottle yesterday I was so cold, today I'm in a sweaty puddle!). Headaches, visual disturbances, bowel issues, muscle weakness, night sweats, always need to pee, always dehydrated. The list goes on and on. Again, I've seen no specialists, only had blood tests. I didn't even see an CFS specialist in person, they diagnosed me over the phone....
It is really difficult when your gp doesn't take your symptoms seriously. I know from experience how hard that is particularly when you feel so unwell.
Are you able to see another doctor in your surgery?
After years of being dismissed I resorted to writing a letter to my doctor outlining my problems, what my symptoms were and asking for blood tests and a referral to a specialist. I included research regarding Central Hypothyroidism to back it up from SeasideSusie's reply to a previous post.
After a few brief and polite letters sent to the gp and also separate ones to the practice manager I got blood tests done and a referral to an endo. It was worth the effort as I was just being fobbed off before but this got my issues taken seriously.
So I highly recommend putting your concerns in writing. It was also a challenge for me as I'm dyslexic and the written word is not my thing but I got it done.
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