My GP is calling my latest thyroid results ‘borderline’ and doesn’t think it explains my symptoms. I’m livid! 19 months I’ve been waiting for my blood results to get outside NHS normal range from low in range. Now at TSH 0.32 (range is 0.35+). I have an enlarged multinodular goitre, I have iron infusions, I’ve had endoscopies, I take HRT, my symptoms are worsening. I’m sick of being palmed off with antidepressants for my symptoms! I’ve had enough. Please help, what can I do?!
Help with GP gaslighting: My GP is calling my... - Thyroid UK
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My blood test results. (Haematology Dr is sending me paperwork for full iron panel, vitD and B12, tbc)
Blood tests results
SlowDragonAdministrator
Your iron/ferritin is terrible - what iron supplements has GP prescribed
Will tag humanbean and SeasideSusie
Are you still having periods?
what’s your diet like
Aiming for ferritin at least over 70 and nearer 100 likely better
cks.nice.org.uk/topics/anae...
In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency
Also See page 7 on here
rcn.org.uk/-/media/royal-co...
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
List of iron rich foods
Links about iron and ferritin
An article that explains why Low ferritin and low thyroid levels are often linked
preventmiscarriage.com/iron...
irondisorders.org/too-littl...
davidg170.sg-host.com/wp-co...
Great in-depth article on low ferritin
oatext.com/iron-deficiency-...
Thyroid disease is as much about optimising vitamins as thyroid hormones
healthunlocked.com/thyroidu...
restartmed.com/hypothyroidi...
Post discussing just how long it can take to raise low ferritin
healthunlocked.com/thyroidu...
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
Medichecks iron panel test
medichecks.com/products/iro...
Iron and thyroid link
healthunlocked.com/thyroidu...
Excellent article on iron and thyroid
cambridge.org/core/journals...
Posts discussing why important to do full iron panel test
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Chicken livers if iron is good, but ferritin low
healthunlocked.com/thyroidu...
Shellfish and Mussels are excellent source of iron
healthline.com/nutrition/he...
Heme iron v non heme
hsph.harvard.edu/nutritions...
Ferritin over 100 to alleviate symptoms
healthunlocked.com/thyroidu...
Low Iron implicated in hypothyroidism
healthunlocked.com/thyroidu...
Ferritin range on Medichecks
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
Thanks to fantastic advice from this forum last year, my iron is all good. I had my last iron infusion in October 2022. I have a fantastic NHS haematology Dr, when my ferritin gets to 50, I get an infusion within one week. For life!
SlowDragonAdministrator
If ultrasound has confirmed Hashimoto’s despite negative antibodies……Suggest you go over GP and see thyroid specialist endocrinologist
GP very unlikely to understand thyroid disease enough to prescribe levothyroxine until TSH is over 5 (as per guidelines )
Starting levothyroxine - flow chart
gps.northcentrallondonccg.n...
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/wp-content/up...
Email Thyroid U.K. for list of thyroid specialist endocrinologists and doctors
tukadmin@thyroiduk.org
I’m very confused, I thought I was looking at hyperthyroid/Graves because the TSH is low?
The GP said the barrier to referring me to endocrinology was my TSH being in normal range so I’m cross she’s now backtracking.
The thyroid ultrasound was with ENT (May 2021) and the most obnoxious Dr I’ve ever met. It’s not cancer, bloods normal, go away, was his message.
No medical professional has given me any answers.
Private endo is my only option in this scenario? 🙁
Ft4 slightly low, Ft3 “normal”
TSH low
Low vitamin levels tend to lower TSH
I would suspect your low iron/ferritin is directly linked to struggling thyroid …..more hypothyroid (at moment)
When was last iron infusion
Obviously ferritin dropped dramatically between March (145) and Sept (32)
Have you had cholesterol levels tested
High cholesterol is linked to being hypothyroid
What vitamin supplements are you currently taking
Aiming for vitamin D at least over 80nmol and between 100-125nmol might be better
Folate was low when last tested
Are you taking vitamin B complex?
What are you most prominent symptoms?
If you have “hot” nodules they can make thyroid hormones regardless of TSH
My last iron infusion was October 2022, before that December 2021. I will have full iron panel in January 2023.
Yes, cholesterol was normal
I’m taking D3 2000iu, igennus triple magnesium complex, K2/MK-7.
I have struggling with the thorne B complex recommended. Initially I got a really horrible reaction palpitations burning skin rash. But as I continue to take it I still feel chest pressure and palpitations and it’s put me off taking it. I need to find an alternative that is less ‘full on’.
My symptoms began around three years ago with insomnia.
The goitre was spotted May 2021 by a physio following a minor car accident, this was the first time I’d been seen f2f in a year due to covid.
My symptoms are…
Debilitating insomnia: I get 4-5 hours a night, unless I take 5mg melotonin then I get 6-7 hours
Nighttime anxiety & panic
Waking at night gasping for breath
Fatigue, fall asleep mid-afternoon
Brain fog
Cognition and memory issues
Hearing has worsened
Increased sweating, particularly my neck area
Digestive issues, loose or constipated
Absorption issues: Anaemia, low vitD & b12
Muscle weakness and shaking from minor exertion e.g. walking down the stairs
Trembling
Neck pain
A sensation of a lump in throat
Dry eyes
Bright light bothers me
Palpitations
I take HRT and tranexamic acid.
I had endoscopies in sept 2022 to investigate the digestive issues and blood loss - all clear
My symptoms are really affecting my life, I don’t recognise myself and I do need some medical help.
The goitre was spotted May 2021 by a physio following a minor car accident,
Did you have whiplash ?
wellnessresources.com/news/...
Request GP test cholesterol levels
Has anyone tested adrenals
regeneruslabs.com/products/...
cdn.shopify.com/s/files/1/0...
no whiplash, lower back/hip ache.
The goitre was prominent, I didn’t even know where my thyroid was! (Embarrassed)
Cholestrol was just tested
Never had adrenals tested
Cholesterol results
PurpleNailsAdministrator
Doctors often conclude Low TSH = hyper but the FT4 & FT3 are the important focus.
You can have nodule/s causing disfunction - without autoimmune. Although autoimmune & nodules often occur together they can both occur separately.
With antibodies - results within the expected range is negative & yours are negative. if it’s above the limit it’s positive for autoimmune.
TPO & TG antibodies are high with under active & often present with hyperthyroid. TSI & TRab are antibodies more closely associated with Graves hyper - but this isn’t usually tested until FT4 & FT3 well over range.
Nodule\s can sometimes autonomously hyper function. So it’s possible your levels are gradually rising & high for you.
So far your FT4 & FT3 have been in range & therefore do not require treatment.
When thyroid levels rise the TSH will drop to correct the rising levels.
If there’s is a gradual increase of thyroid levels from a hyper nodule over time the TSH can become undetectable before the FT4 & FT3 rises.
Doctors usually look to treat once the TSH is low, so if your TSH is persistently low they may reconsider.
If you monitor your FT4 & FT3 closely you may see it rise gradually.
Once FT4 & FT3 are above range treatment is necessary. I have a solitary toxic nodule & my FT4 & FT3 rose very gradually over years. My FT3 was disproportionately higher & likely over range for several years before FT4 became over range. This was unbeknown to me at time & only discovered after going through historical hospital records.
Medics are trained to diagnose and treat by TSH!
Science proves this is nonsense...
This ignorance is leaving many patients very unwell
TSH is a pituitary, not a thyroid hormone, it reflects the overall level,of thyroid hormones( T4 and T3) in the blood.
BUT it does not reflect the level of each hormone ...which are the important markers
Low TSH generally indicates high hormone level in the blood ...but not which hormone is high
Conversely high TSH generally means there is insuffient thyroid hormone in the blood ... but not which hormone is low.
They just don't get this basic principle!!!
thyroidpatients.ca/2021/07/...
FT3 followed by FT4 are the important markers.
So long as FT3 remains in range ( sometimes slightly over ) you are unlikely to be hyperthyroid
T3 is the active thyroid hormone and for good health must be available in an adequate and constant supply....either by natural body function or by replacement hormones
Low FT3 may be the consequece of impaired T4 to T3 conversion and / or low essential nutrients vitD, vit B12, folate and ferritin
But your FT4 is consistently low so it looks as if the problem lies here and you need to be medicated with levothyroxine. This in turn should adequately convert to T3 because your FT3 levels are high enough to indicate that existing T4 must be converting to T3.
Poor conversion would be indicated by high FT4 with low FT3
Your FT3 has only been measured twice....
14/10/ 21. 4.7 (3.1 -6.8) 43.24% through the reference range
27/6/ 22. 5.0 (3.1 - 6.8) 51.35% ditto
Both Frees should be approching 75% through the ref range so you are undermedicated....and suffering symptoms of this.
I haven't calculated the FT4 readings because they basically show
a) your conversion rate is ok
b) you need to be medicated with levothyroxine
Starter dose 50mcg...test again after 6/8 weeks and add 25mcg...test again in 6/8 weeks and then adjust dose accordingly. Repeat until you feel well and FT4 and FT3 are roughly 75% through ref range.
Calculator to check %ages
thyroid.dopiaza.org/?utm_so...
Your vit D should not be falling as low as 50...see other replies.
Anxiety and depression indicate hypothyroidism...correct thyroid medication should resolve this!
Hope something here resonates and helps
Good luck!
i understand how frustrating it is to not know what is wrong when you feel ill for years , but your GP is correct to say they are only borderline.... there is no thyroid treatment he can give that is is appropriate at the moment.
it is possible that these thyroid results are normal for you... (unless you have previous test that show a different pattern eg. a higher TSH) ..... for some poeple a TSH that is at the bottom end of the '95% population range' (lab range) is their 'normal' level . ....that's how 95%population ranges work . They take a sample of healthy people measure TSH, then remove the top 2.5% and the bottom 2.5% of people from the results . leaving 95% which are used to set the range ... so some people do have thier normal/ healthy TSH right at the bottom of the range .. and in fact another 2.5% of people have their healthy TSH slighly below the range.
Your TSH hasn't really altered much over the period of these results... the slight variation you have from 0.82 - 0.32 is very small and is an expected part of normal function. ie. you would expect TSH to change by this much within each day.. (highest early a.m ~ lowest early afternoon)
Your FT4 is neither particularly high or particularly low .. it's currently FT4: 15.3 pmol/l (Range 10.5 - 21) 45.71%
your fT3 is neither particularly high or particularly low ,, it's currently FT3: 5 pmol/l (Range 3.1 - 6.8) 51.35%
These have both been stable over the period of these results .. and having both around 50% ish with one a bit higher than the other is not at all unusual for people with healthy thyroid function. *see picture below, shows what T4/T3 %'s can be for individuals without a thyroid problem .. not everyone has levels over 50%
So If your usual TSH level has always been at the bottom end of the range . then there may be nothing wrong with your thyroid function.
But If your TSH was not always this low , or if your usual T4 /T3 %'s were significantly different to 50% ish , then where they are now could indicate the begining of a problem .... but for the period you have shown on your chart , your results are stable and don't immediately indicate a thyroid problem .
The problem we all face (including GP's) is that we rarely know what anyone's thyroid results looked like when they felt well .. so it is very difficult to know when 'borderline' results are showing a problem or when they are actually 'normal' for that person . This only becomes apparent when they significantly worsen .. or we see a gradual trend going towards hypothyroid or hyperthyroid over time .
There are only really two ways of treating thyroid issues :
~ if the T4 / T3 are too high (hyperthyroid).. then the treatment is to reduce the thyroids ability to produce T4/T3 ( using anti-thyroid drugs ~ Carbimazole or PTU)
~ If the T4/T3 are too low (hypothyroid) . then the treatment is t replace the low T4 / T3 with synthetic thyroid hormone ~usually with Levothyroxine, which is T4...(and occasionally with Liothyronine which is T3 , if using T4 alone doesn't fix the symptoms)
Neither of these options is an obvious treatment for you at the moment .. you don't have 'too high T4/T3' (hyper) ~ so reducing them is not appropriate .. and you don't have 'too low T4/T3'(hypo) ~ so supplementing them is not appropriate either .. (in fact if you did supplement T4 at this stage , you may actually end up lowering your fT3 due to the complex way the body works to balance thyroid hormone levels .. and T3 is the important 'active' thyroid hormone .. T4 is basically just a 'long-life store/ transport form which is basically inactive.
So don't get me wrong .. i'm NOT saying ' there is nothing wrong with your thyroid'~ i know how depressing that is to hear when you've waited months in expectation and feel really unwell .. i'm just trying to explain why the GP said borderline and why he can't actually do much about it yet .
10 HEALTHY SUBJECTS ~YOUR RESULTS ARE SIMILAR TO NO. 4
I just checked and there’s this from Dec 2014, almost two years post pregnancy:
Serum TSH level (XaELV) 0.84 miu/L [0.35 - 5.5]
Why is my thyroid noticeably enlarged and I have all these symptoms? I can’t live on 4-5h sleep per night. I’ve listed all my symptoms below…
I’m finding it really upsetting to keep being offered antidepressants when the only time I feel anxious is 2am when I can’t sleep.
i totally sympathise ... "well ,we could try you on some antidepressants ...." is infuriating. when you're not depressed. i suppose it's just what they trot out when they don't know what else to do with you. I got that over and over again for about 4 years before anybody thought to test my thyroid ... drives you nuts .and in darker moments makes you doubt yourself too. especially when you're not getting proper sleep...insomnia is slow torture. and will be worsening all sorts of symptoms. But i know the difference between " i don't want to do stuff".. and "i do want to do stuff but i can't keep it up , because my damn body can't manage it"... and it was never my head that was the problem , it was something wrong with my body.. the tricky part is finding out 'what'.
i'm afraid i don't know much about enlarged thyroid's (with, or without nodules) , mine has always stayed un- noticeable despite having autoimmune hypo so i've never been offered an ultrasound. I'm really sorry you're having such a rough time .. and i wish i had something constructive to suggest .... not being able to help is rubbish , but not as rubbish as not knowing what's wrong and being offered antidepressants AGAIN....
Thank you. That’s exactly why it feels like gaslighting. I don’t want antidepressants!
Haematology, gastro, GP, nobody seems to look at the bigger picture….
Your iron and other iron-related levels will be adding to (and causing) some of your poor health problems. Most of your iron results are terrible.
I notice you had an iron infusion in December and you also refer to having regular infusions. If you could list when you got iron infusions so I can compare those dates to your results it would be helpful.
We can get an idea about your absorption and retention of iron from your ferritin (iron stores) in March 22 and July 22. Your ferritin dropped by roughly 93 points in four months (or roughly 23 points per month) which is really bad.
This is not particularly unusual. When I was struggling with my iron and ferritin I lost 80 points in my ferritin level in four months when I wasn't supplementing, so it wasn't quite as bad as yours.
The secret to looking after your iron levels is actually quite simple... You need to supplement permanently and test regularly, so that you can adjust your supplement dose as necessary.
The difficulties come from not knowing how fast you gain or lose iron, and which supplements you can tolerate, and at what dose. Also, iron/ferritin loss or gain won't always be consistent.
Did you know that all the iron supplements the NHS prescribes can be bought without prescription? Also, the most important information about any iron supplement is the amount of pure (elemental) iron each tablet contains. The higher the iron content the fewer people can tolerate it. Taking iron with food reduces the tolerance problem but does reduce absorption. - but if you take more, can't tolerate it, and give up the iron pills they do no good at all.
I listed a lot of iron supplements available in the UK in this reply to another member :
healthunlocked.com/thyroidu...
You need to find one that you can tolerate on a fairly long term basis.
I would suggest that, to start with, you try ferrous gluconate 300mg. The maximum dose is six tablets a day. But you don't have to take six. You can start with one per day, taken with food. Iron should always be taken four hours away from any thyroid hormones. If you tolerate one tablet of ferrous gluconate, add a second one after a week or two - always with food - and see how you tolerate that. Then add a third, and so on. Try and spread your iron supplements out throughout the day.
Another possibility is ferrous bisglycinate - quite a few people tolerate that (because it has less iron in than prescribed iron pills).
Another thread you should read is this one :
healthunlocked.com/thyroidu...
You should experiment with the suggested "every other day" protocol as well as the "every day protocol". But always keep very good records of tablets taken, dosages taken, protocol followed, test results etc so you can find out what works best for you.
It took me nearly two years to raise my ferritin to mid-range. My serum iron stayed quite low, and has still never reached mid-range. After I got my ferritin to mid-range I reduced my iron supplements to one tablet twice a week. Then over time I found that my ferritin still dropped so I increased to one tablet three times per week, then four then five, and I alternated between 4 and 5 tablets per week for a long time. Eventually I found my ferritin shot up to top of range so I stopped supplementing altogether. I supplemented for seven years in total.
Note that iron absorption is improved by taking it with high-dose vitamin C. This also helps with tolerance. Many people get constipated with iron supplements. Vitamin C is a laxative in high enough doses. You can adjust the amount of vitamin C you take to try and prevent constipation it will help. Take vitamin C with food as well as your iron. Vitamin C is an acid and can cause intolerance problems.
For some useful info on vitamin C supplements :
lpi.oregonstate.edu/mic/vit...
Note, if you were to choose to take, for example, calcium ascorbate, that you have to take into account that the calcium content could mount up to undesirable levels. (Personally, I wouldn't take calcium ascorbate for that reason. I don't want all that calcium lining my arteries.) The same is true of sodium from sodium ascorbate, magnesium from magnesium ascorbate etc...
I can’t supplement iron, I get extreme cramps and d and I’ve tried everything there is. I had very good advice here last year and am now under an excellent haematology Dr. My last iron infusion was October 2022. Due to do full iron panel in a few weeks.
My symptoms began around three years ago with insomnia.
The goitre was spotted May 2021 by a physio following a minor car accident, this was the first time I’d been seen f2f in a year due to covid.
My symptoms are…
Debilitating insomnia: I get 4-5 hours a night, unless I take 5mg melotonin then I get 6-7 hours
Nighttime anxiety & panic
Waking at night gasping for breath
Fatigue, fall asleep mid-afternoon
Brain fog
Cognition and memory issues
Hearing has worsened
Increased sweating, particularly my neck area
Digestive issues, loose or constipated
Absorption issues: Anaemia, low vitD & b12
Muscle weakness and shaking from minor exertion e.g. walking down the stairs
Trembling
Neck pain
A sensation of a lump in throat
Dry eyes
Bright light bothers me
Palpitations
I take HRT and tranexamic acid.
I had endoscopies to investigate the digestive issues and blood loss - all clear
My symptoms are really affecting my life, I don’t recognise myself and I do need some medical help.
My iron issues have been over the last 11 years through three pregnancies. I was being fobbed off last year about it (serum iron was 4!) and I had to be really assertive to get referred to haematology.
What’s your diet like
Are you vegetarian or vegan
Gluten intolerance or dairy intolerance?
Debilitating insomnia: I get 4-5 hours a night, unless I take 5mg melotonin then I get 6-7 hours
Nighttime anxiety & panic
Could be cortisol or adrenaline. You can't tell from symptoms whether cortisol is low or high. It must always be tested before acting on the result. Cortisol can be tested via blood, saliva, or urine. In the opinion of many on the forum the most trustworthy is saliva. Doctors usually test blood, and occasionally urine.
I don't know how adrenaline can be tested, and I can't remember anyone quoting a result for adrenaline on the forum.
My diet is varied, I do eat meat, green veg, etc.
No food intolerances.
Coeliac checked
Coeliac test result
Hello, this may be a long shot, but all information is potentially useful. Have you tried investigating whether your problem could be oxalate toxicity? Have a look at the work of Sally K Norton, or Elliot Overton's YouTube channel. I mention oxalates because it would explain a lot of your symptoms, particularly the problem with your iron levels (oxalic acid binds to minerals such as calcium, magnesium and iron, causing deficiencies). Incidentally, oxalate crystals are implicated in causing thyroid problems, so people with thyroid problems would be well advised to assess their consumption of oxalate-rich foods.
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