hi
started HRT in oct and have put on a stone already. I felt it was possibly affecting my thyroxine levels and felt sure I needed more. She’s just called to say she wants me to reduce to 100 (from 125). Also iron is low and I’ve to take a pill for that. I occasionally get a little anxious (nothing major and she is now saying it’s the thyroxine). Feel scared to lower as I’m most definitely not feeling hyper. TSH 0.05 which does sound low and free T4 20. Any advice?
Update with blood results :
Just testing TSH and Ft4 is completely inadequate
Was this test done early morning and last dose levothyroxine 24 hours before test
As detailed in previous post a year ago
healthunlocked.com/thyroidu...
Refuse to reduce dose yet and get FULL thyroid and vitamin testing
Low vitamin levels tend to lower TSH, especially low ferritin
If Ft4 and Ft3 are not over range then you are not over medicated
More likely that you have poor conversion of Ft4 (levothyroxine) to Ft3 (active hormone)
low FT3 results in low vitamin levels
Low vitamin levels results in poor conversion rate of Ft4 to Ft3 and as result low TSH
If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "
obviously essential to improve low iron/ferritin levels
also essential to test vitamin D, folate and B12
come back with new post once you get full results
doc is hard work , struggling on the hrt and she suggested antidepressants but I’m not depressed. I will ask for my results thank you!
I feel you, as someone with hormone imbalances myself this is all I get suggested to me. Very frustrating.
I feel a little like I’m going mad , second guessing myself when I know somethings wrong. I’m always dizzy I feel so annoyed the doc told me a few months ago I was ok I could have been treating this. I hope you are ok 🙏
The challenging bit, I find, is that all the methods for hormonal stuff takes weeks or months to try before seeing a realistic result. So we potentially "suffer" through something that might make us feel worse in the end, in the eternal quest to feel better. (I just had this with maca powder, sadly it didn't work for me)
Its so tricky isn't it, the thought that goes through my mind occasionally is that we would be way further ahead in hormonal know-how if blokes struggled with the same problems 😅 which is mind boggling considering there are more women than men in the world. * steps off soap box *
Hope you feel better soon 💐
posted what I have above , also tested white blood count etc have not posted those. Thanks.
Dizziness, another option to investigate is the Epply maneuver. Lots of videos on YouTubeand only costs a bit of time. When I have tried this and do not get relief, I visit my chiropractor. This is a 95% solution for me and not related to meds of hormones. The answer might be different for you.
Hi Newlou,
Please provide the ranges for your thyroid blood tests, as these can vary between laboratories. Can you share your ferritin levels too?
When was the last time you tested other key thyroid vitamins (folate, B12 and vit D)?
I would give your surgery a ring if you don’t have online access to your results. Ask for a print out, as it’s hard to get everything down on paper if they just read them out. Remember, you are legally entitled to copies of all tests.
You are legally entitled to printed copies of your blood test results and ranges.
See if you can get access to current and historic blood test results by asking to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Link re access
patients-association.org.uk...
healthunlocked.com/thyroidu...
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
very rare for NHS to test Ft3 unfortunately these days
Good grief ferritin is severely deficient at 6
Are you vegetarian or vegan
Or heavy periods?
You probably qualify for iron transfusion
Request/insist GP do full iron panel test for anaemia
Also essential to test vitamin D, folate and B12
And coeliac blood test too
I also asked for a print off of my oct results where I said I’d almost lost all my eyebrows.. she said then was a little low try manage myself (looking now it was 9 so I prob needed help then). So I’ve been assuming the ear swooshing , freezing hands , palpitations etc etc were peri menopause or thyroxine not working 🙈. Thank you for you help ❤️
Low Ferritin is a big problem here. Those were all my symptoms when I had Ferritin around 8. Note my haemoglobin was at the top of normal but a haemotologist confirmed that I had severe Iron Deficiency Without Anaemia. Anxiety, fatigue, hair loss, ear whooshing and joint pain were main symptoms. I would get this resolved first then look at HRT and leave Levo dose well alone at this stage.
I was told by Haem that under 50 is deficient and under 30 is severely deficient.
I am in Scotland and they refused an iron infusion so I went private to a London clinic. If you try and get Ferritin up from 6 via tablets alone it will take many months - best regime is one Ferrous Fumarate tablet (is that what GP prescribed?) a day with vitamin C in some form sucha s orange juice. Away from food and other meds. If you try and take more you'll probably get gastric upset.
I’m not vegi and don’t suffer heavy periods just normal! I don’t eat a lot of meat but I’d say enough.
So you need referral to haematologist
And coeliac blood test
Presumably your not currently on gluten free diet
no not gluten free🙈
Look back through your old blood tests ….ferritin below 30 is deficient
Likely you should have been treated a long time ago
nice.org.uk/guidance/ng20/c...
1.1 Recognition of coeliac disease
1.1.1 Offer serological testing for coeliac disease to:
people with any of the following:
persistent unexplained abdominal or gastrointestinal symptoms
faltering growth
prolonged fatigue
unexpected weight loss
severe or persistent mouth ulcers
unexplained iron, vitamin B12 or folate deficiency
type 1 diabetes, at diagnosis
autoimmune thyroid disease, at diagnosis
irritable bowel syndrome (in adults)
first‑degree relatives of people with coeliac disease.
so a level 9 in oct to be told it was just a little low now feels so wrong. Do you think I insist on sticking to my 125 thyroxine and not do as she says and lower to 100?
I would
Your Ft4 isn’t over range
With such terrible ferritin level your Ft3 is likely very low
Refuse to reduce dose levothyroxine at moment
Work on getting ferritin at least over 70 and nearer 100 probably better
Get vitamin D, folate, B12 tested and improved to optimal levels
Get coeliac blood test done
Do you have autoimmune thyroid disease (hashimoto’s)
Ever had both TPO and TG thyroid antibodies tested?
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Symptoms of hypothyroidism
thyroiduk.org/wp-content/up...
Hi, Do you have autoimmune thyroid disease (hashimoto’s) - YES
Ever had both TPO and TG thyroid antibodies tested?- not that I know off
I agree but there is no way I would have got a Haem referral (in Glasgow) so unless bloods suggest Anaemia of Chronic Disease. Low Ferritin is so misunderstood by some GPs- probably because it mainly affects women 🙄
Agree totally
We see hundreds of members who don’t improve until Ferritin is over 100
Hi, I am unsure if this will be picked up, you all advised me a year ago. I have been plodding along ok and my doc suggested I up my HRT oestrogen and do full blood count as my eyebrows are still falling out as I said I am certain my ferritin has dropped again (last count was 6 and iron pills helped and she took me off them as numbers were up).
Full blood count and Ferritin is 40 (better - not convinced good enough) and TSH 0.03, T4 19.5 (last time 0.05 and 20 - she was adamant was reducing thyroxine and you all advised me to say no).
This time she gave me no choice, reduced to 100 said protecting my heart. I tried to say I think upping oestrogen and lowering thyroxine same time seems stupid...(hope this makes sense).
My question is: I feel awful..could a reduction from 125 to 100 take hold so quick (reduced around 16 Jan). I am very aware it could be the increased hrt ..the trouble is both this and too little thyroxine have the same side effects. I am so depressed, zero energy, shattered and not in a good place. I think I need to find money to go private, scared to pick phone up to surgery as I think they will say I haven't given it enough time...
so you need to self test full iron panel including ferritin and then self supplement iron to get ferritin levels higher
retest 3-4 times a year if self supplementing.
It’s possible to have low ferritin but high iron
Iron is toxic in excess so it’s important to retest regularly
stop iron supplements 3-5 days before testing
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
Medichecks iron panel test
My question is: I feel awful..could a reduction from 125 to 100 take hold so quick (reduced around 16 Jan).
Almost Time to get new test including Ft3
Test 8 weeks after any dose reduction in levothyroxine
Do you always get same brand Levo at each prescription
Dose reduction was heavy handed……if you needed dose reduction (unlikely) reducing by 50mcg PER WEEK quite likely enough
You have been reduced by 175mcg PER WEEK
so probably now hypo
This time she gave me no choice, reduced to 100 said protecting my heart.
It’s rubbish
Low TSH is largely irrelevant on replacement thyroid hormones …..as long as your Ft3 and Ft4 within range
Some people on JUST levothyroxine will need Ft4 just OVER range to get adequate Ft3 (at least over 60% through range)
In this case might be better to reduce levothyroxine a little and add small doses of T3 alongside Levo ( usually 2 x 5mcg T3 or 3 x 5mcg)
If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "
Prof toft quote
healthunlocked.com/thyroidu...
from PULSE magazine for GP's... The article is available from ThyroidUK
If you want a copy of the article then email tukadmin@thyroidUK.org
and ask for a copy of the Dr Toft article in Pulse magazine. The quote is in answer to question 6.
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)."
heart.bmj.com/content/84/4/...
Over replacement with thyroxine?
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.
Low TSH no heart issues
academic.oup.com/jcem/artic...
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.
Low ferritin
Exactly what iron tablets have you been prescribed and how many per day
will tag humanbean who might add some advice
cks.nice.org.uk/topics/anae...
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
Full iron panel test
Medichecks iron panel test
medichecks.com/products/iro...
Meanwhile 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
irondisorders.org/too-littl...
davidg170.sg-host.com/wp-co...
Great in-depth article on low ferritin
oatext.com/iron-deficiency-...
drhedberg.com/ferritin-hypo...
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.
healthunlocked.com/thyroidu...
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
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...
Great research article discussing similar…..ferritin over 100 often necessary
ncbi.nlm.nih.gov/pmc/articl...
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. ‘
Here’s absolutely excellent reply by @humanbean
on iron and ferritin panel test results for another member
healthunlocked.com/thyroidu...
Good explanations of iron
theironclinic.com/iron-defi...
theironclinic.com/ironc/wp/...
Helpful info on iron infusion and supplements
healthunlocked.com/thyroidu...
this is great I will go over all this. SHe’s given me ferrous fumarate 210mg x two a day
humanbean has info that taking alternate days may possibly be more effective
Referring to your iron, you might want to take a look at these threads :
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
In the above thread ignore the stuff about pregnancy.
Even with Patient Access, Still get your printouts and keep meticulous records. Surgeries can prevent you from accessing your history if they think there is something 'distressing' in it. I alerted my surgery to the fact I knew I had been mismanaged at the start and certain records selectively 'disappeared'. Of course I had already taken screenshots, already had printouts and actually gave reception copies of the missing records to scan back in. Not sure that ever got back to the doctor but they give me an extremely wide berth now. 😂
😆laughed at this .. but it’s actually not funny I know! I bet they dread your calls haha that’s how I feel. She actually said to me the other week what is it you want me to do for you (after I refused her antidepressants).. I said take bloods!
I'm nothing but professional with them and they find that really disconcerting! I'm also super nice to all the reception team as they get so much poop from the general public. They are truly between a rock and a hard place. They are nothing but nice back to me too bless 'em .........
😆 so funny ./ one of my receptionists has given me wrong results twice but she’s nice , the other is on ball but sour faced 🤭
I’m going thru the same thing. My TSH is .05 also. They changed my Thyroxine from .137 to .125. It still low at .07 a month later. It came up a little bit .Not sure what’s going on . But I did lose 40 lbs pretty quickly, and weight loss too fast can affect your thyroid. I will let you know when I find out what’s going on !
did you lose weight deliberately you mean? If so that’s great. Any time in past the pounds have gone on I usually need more thyroxine so I was shocked that this time with a stone on she wants to reduce. Good luck 🤞
A month earlier all my yearly bloodwork was perfect. All of a sudden ,I couldn’t get enough water, I thought it was the weather, I realized excessive thirst is a sign of high sugar . I took my sugar and it was almost 300 ! I’ve been on diet control for 20 years and was doing great. It’s like someone pulled a switch .! I went immediately on a low carb diet. And I started to lose right away. My sugar is better now , but I’ve raised the caloric intake,because I don’t want to lose anymore !
Yes, a slow thyroid will cause weight gain ,and over-active thyroid will cause weight loss. I did some research, and found you can have Hashimoto’s and Graves Disease at the same time . Hypo & Hyper ? Together ? Strange !
Good luck 🍀 to you too !
gosh aren’t our bodies a mystery. Wel done taking control. I’ve been a little underweight but now a stone heavier it’s to much to quick hence I’m loathed to to reduce meds. Good luck 😉
Confused over importance of TSH vs FT3? Doc wants to reduce thyroxine
My dr wants to reduce my thyroxine
Dr Wants to reduce my Thyroxine further - aghh
Thyroxine lowered - feeling dreadful!
