Hello I’m new here and would really appreciate some advice.
I am a (usually) healthy, fit and active 45 year old mum of three who was diagnosed with Hypothyroidism in July this year after 5 years of unexplained fatigue and other bizarre symptoms that have impacted my life in many ways. This more recently progressed to almost complete exercise intolerance, alcohol intolerance and nocturnal fainting episodes alongside irregular periods and very heavy flooding. My Ferretin levels have been low for years since I had my daughter (between 4 and 8) and the highest I’ve managed to raise them is 14.
In July I was prescribed Levothyroxine 50mg when my results were
TSH = 10.5
T4 = 10.5
My most recent test in August showed my levels had changed to
TSH = 2.31
T4 = 14.5
Despite my levels changing I felt awful (if not worse) and the last week or two I’ve felt much worse and have developed huge black circles under my eyes and have been sleeping so heavily that I haven’t heard my daughter when she’s woken in the night (this has never happened!).
Then yesterday I had a very scary episode of feeling like my body was just shutting down. I felt like concrete, my heart was racing, my hands and feet were so cold and I felt like I was fighting to stay conscious. I nearly called an ambulance but instead called my neighbour who took me to the GP surgery and I had an EGC (normal except a prolonged QT interval?) and emergency bloods which I am waiting for the results of. These episodes happened on and off all day and into the evening.
My GP said my pulse was shooting up when I stood up and he suspects it’s either too much T4 or Anemia. I have never felt so poorly and was quite scared. I’m feeling a bit better this morning but have been too scared to take my Thyroxine.
Has anyone ever experienced these symptoms? I hate to sound dramatic but I thought I might die. Any advice would be appreciated as I’m due to speak to the GP again today.
Thank you for reading
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Runcmc
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You are not sounding dramatic and do not apologise for how you feel or your symptoms.
It shouldn't be up to you to deal with this very low ferritin level -
Has an iron panel been run and an iron infusion recommended ?
No thyroid hormone replacement works well if your core strength vitamins and minerals - those of ferritin, folate, B12 and vitamin D are not maintained at optimal levels -
I know now - I need to maintain my ferritin at around 100 - folate at around 20 - active B12 at around 125 ( serum B12 - 500 ++ ) and vitamin D at around 125.
When I first started my research into my low ferritin of 22 - I read that no thyroid hormone works well, converts or is utilised well until ferritin is at least over 70:
A TSH over 10 - means you are diagnosed hypothyroid and T4 Levothyroxine is the first treatment option prescribed -
Were any thyroid antibodies run on this first blood test or vitamins and minerals ?
Do you have the ranges for the T4 please ?
The aim of the medication is to bring the TSH down to at least under 2 with further blood tests every 6-8 weeks and dose increases x 25 mcg T4 prescribed so to take your T4 up into the top quadrant of its range which is generally where we feel better and with symptoms relieved
I’ve never had a full iron panel or been offered an infusion. I’ve been back and forth to GP for several years to discuss how I can raise my iron and they suggested a Mirena Coil to stop the heavy bleeds but I don’t want a coil as I know I am sensitive to synthetic hormones. Both my daughters have recently had their coils removed due to side effects which doesent fill me with confidence. They didn’t really suggest anything else after I refused it, so I’ve been taking Hemaplex sustained release which is 42mg of iron daily. I thought my irregular / heavy periods were due to perimenopause but since being on thyroxine they have been regular (with a shorter cycle) but still flooding.
You are highly likely ready (desperate) for next dose increase in Levo to 75mcg daily
Was August test done early morning and last dose Levo 24 hours before test
What’s range on Ft4 (figures in brackets after result)
Request new test including vitamin D, folate, ferritin and B12
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
What vitamin supplements are you taking
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
TSH should be under 2 as an absolute maximum when on levothyroxine
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
Most people on levothyroxine find they need Ft4 (levothyroxine ) at least 70% through range when optimally medicated
And Ft3 not far behind
For good conversion of Ft4 to Ft3 we MUST maintain GOOD vitamin levels
Being hypothyroid results in low stomach acid, this leads to poor Nutrient absorption and low vitamin levels
Vicious circle
Extremely common to need to supplement vitamin D, separate magnesium, separate vitamin B complex daily
Often a separate B12 initially
And low iron/ferritin common, especially when left too long on inadequate dose Levo
Get vitamin levels tested NOW
Many medics are completely unaware of gut connection and relevance
You don't give us reference ranges with your labs....please add
From the limited info we have I'd suggest your thyroid hormone levels are too low and you need more levo.
Your response, tho perhaps more extreme, is not unusual when introducing or increasing thyroid hormones.
Your system has recognised the addition of the thyroid hormone it needs, but very quickly senses the dose is inadequate, so it reacts by increasing your symptoms....a cry for help for more hormone!!
Understandably you felt scared and your GP doesn't sound au fait with thyroid hormones I'm afraid....not unusual!!
It's not a quick fix like headache/ paracetamol but there is a fix....correct type and dose of thyroid replacement hormone.
So, onwards.....
50mcg levo is just the starter dose.
6 weeks after starting T4 you should have been tested again and your dose increased to 75mcg....followed by a further test after 6 weeks. The result would then indicate, or not, the need for further increase(s)
Also vital to optimise vit D, vit B12, folate and ferritin to support thyroid function
And, if not already done, test thyroid antibodies TPO and Tg to check for Thyroid Autoimmune disease/ Hashimotos, a common cause of hypothyroidism
Until your thyoid levels are corrected I suggest you avoid unnecessary exercise.....your metabolism is very possibly running too slow, due to low T3, and exercise is just exacerbating the problem.
We would advise you have a full thyroid test to include...
TSH, FT4, FT3, vit D, vit B12, folate and ferritin and T/ antibodies TPO and Tg
...after fasting overnight, so away from all foods and drinks except water
...24 hours after last dose of levo
This gives the most accurate results on which to base dosing.
Come back with any new labs you have but meantime see your GP and ask them to increase your dose to 75mcg....sometimes more successful to ask for a trial increase, they still feel in control!!
Don't continue as you are ....you need to be correctly medicated!
Tick off your symptoms on this list and take it to the appointment. Low thyroid hormone, particularly T3, can affect any or all of the body
I'm sorry to say this but your doctor is a complete waste of time -
your T4 is just around 40% through the range - so how can this be T4 building up in your body -
T4 is meant to build up in the body to around the top quadrant of the range at say 80% through - with the T3 tracking just behind at 70% through its range.
The issue is more one of there being no T3 reading as with low T3 - which is the active hormone that runs the body -you will be feeling dreadful -
and I'm presuming your T3 very low as your ferritin is also very low so your body unable to utilise the T4 and convert it into T3 iin the liver within the body.
Is this a group surgery and you have the option of seeing another doctor ?
Morning, just an update on my lab results. I ended up in A&E last night as I felt so poorly. My heart rate was 90 when I was lying down doing nothing. My GP had ordered urgent bloods on Wednesday which hadn’t come back before the surgery closed, thankfully they were on the system at the hospital.
They sent me home saying what you all said - I need more T4 so am booked in for phone call with GP today.
Looking at my August labs, my TSH has doubled in 4 weeks - is that typical when under medicated? Assuming that’s why I feel so bad as all other bloods and liver function are marked as normal.
I should also add, these bloods were taken at lunchtime on Wed so the T4 level is probably elevated too.
Can I ask, how do you prepare for bloods if you take your Levo at bedtime? Do you skip a dose? I’ve switched to evening now as I think it will be easier to manage taking other supplements around levo this way but can’t figure out how to leave 24 hours before testing.
Can I suggest you start a new post with these 2 posts from 2 hours ago and not direct it to me - we are all here, and together, we can and will freely offer you information -
You deserve all forum members reading the above and advising you - not just me :
We try to answer every post as fully as possible - and any new information deserves a new post/question so we can all follow and support you :
' Tagging ' just me - means no one else will look back here, read your update, or jump in and reply - and I feel I've left you ' hanging ' which isn't nice, so apologies,
but you deserve more than my one pair of eyes at this point in time !!
I know - it's daunting at the beginning and when not well and if with awful brain fog everything takes time to register - you're doing ok - no worries.
Took me 6 months to pluck up the courage to write something !!
Your results maybe marked normal - but look at the ranges - some ranges are too wide to be sensible - look at ferritin - and with a differential of around 300 - so I'm sure someone at 11 would feel very different to someone at 290 in this range :
If you reread your replies above I think we have covered the core strength vitamins and minerals yesterday and your very low ferritin needs investigating - an iron panel run- possibly an endoscopy and colonoscopy and then full supplementation - hopefully an iron infusion -
as ferritin needs to be over at least 70 - for T4 - to work well :
The TSH rises as a marker that you need more T4 - thyroid hormone replacement and once on T4 needs the TSH needs to be maintained at least under 2 and its ok if it goes low and towards the bottom end of the range.
We generally feel best when the T4 is up in the top quadrant of is range at around 80% with the T3 tracking just behind at around 70% through its range.
Your C Reactive Protein - is an inflammation marker - and at 5 seen as high - and means your body stressed and struggling to cope :
Going from what I said yesterday - can you see a different doctor ?
Maybe an endocrinologist a better manager as clearly at the moment your doctor is out of their depth - but the referral will not be immediate and you need proper help now -
You can take your T4 at bedtime if this suits you better :
T4 is a storage hormone so the day before the blood test -
take it in the morning rather than at bedtime -
and then you have the 24 hour window from last dose -
and after the blood draw you shouldn't find a problem going through until bedtime when you resume night time dosing.
Both your folate and B12 levels are not particularly good and given low ferritin it can be reasonably suspected that you might be B12 deficient which can bring on exactly the same symptoms you were experiencing too. If you are not vegan/vegetarian, and eating meat, dairy, eggs nad fish your level of B12 could indicate some form of malabsoption which should be investigated. Have you taken any B12, B complex, supplements with algae or eat B12 fortified foods, or have energy drinks? All of these increase the blood levels of B12 but doesn't mean that it's utilised in the cells where it's needed. Did they do the full blood count with MCV and MCHC?
Another possible issue to address is your heavy bleeding which given your age is probably perimenopause related and my bet is that you might be severely deficient in progesterone. You are right that Mirena coil might not be the bext option but micronised progesterone such as Utrogestan could be better though you would probaly need more than the standard 100 mcg.
Unfortuantely both endos and GPs are notoriusly bad at managing all of these so you might be prepared to do a lot of learning and for the DIY treatment.
I tried requesting progesterone therapy to control heavy bleeds a few months ago as the GP I dealt with said she couldn’t prescribe as it wasn’t on the local formulary for that reason. She even wrote to the local clinical commissioning group to request it but it was refused.
They did do MCV and MCHC - I’ll find and post here tomorrow
I’m glad you have found this very supportive forum: so many members who between us often have had similar problems! I want to pick up on your ‘fainting, or fighting to stay conscious’, fast HR etc …. alhough not a dr. I have these and it sounds like a problem with a range of diagnosis from the more general dysautonomia, to more specific PoTS, or postural hypotension. The later I was diagnosed with in Jan., I have had as a result of Long Covid, and not hypothyroidism ( although Gp fiddling with Levothyroxine dosing recently has made it worse). There are subtle differences between PoTS and PO, both have raised HR on standing for different reasons, the PO being as a result of BP falling considerably ( mine went down to 60/40) and HR rising to compensate to 130+. Have a look at two charity websites PoTS Uk, and the US one Standing up to POTS. I prefer the latter as it has more on PO. I had self diagnosed with POTS by doing the NASA lean test ( google it) effectively you stand up against a wall ( to stop faints) and take your BP and HR over 2,5,10 mins…but I didn’t get the sudden BP drop with this method; I needed a specialist with a tilt table test. The PoTS Uk site has a map with PoTS clinics which is worth looking at, though it is very out of date as of 4 clinics nearest me only 1 still existed, but I rang them up and found out it would except NHS referral out of Trust. The local hospital tried something that was like the NASA test but it too didn’t show odd BP. So I would suggest if you don’t already own them buy an oximeter (clip for finger does HR and oxygen) and BP monitor…you should be able to get both via web for about £30-40 and family can use them for decades, and do some daily recording , and note if anything sets of HR eg standing, walking up stairs, after eating, reaching above your shoulders ( I have to sit down to brush teeth/ hair). On the PoTS website you’ll find out why people, often younger women, get PoTS…low ferritin is an obvious reason,plus other low vit/ mins …worth pursuing as my GPs knew absolutely nothing about it and just kept giving me more hypertensive drugs! By the way I’ve had ecgs, echocardiogram, chest X-rays, 24 hour BP monitor etc…all ‘normal’; other treatments for PoTs include more hydration, compression socks…
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.
Thank you for your incredible patience while you have been awaiting the outcome of our ferritin reference range review. We conducted this with Inuvi lab, which has now changed the reference ranges to the following:
Females 18 ≤ age < 40. 30 to 180
Females 40 ≤ age < 50. 30 to 207
Females 50 ≤ age < 60. 30 to 264l
Females Age ≥ 60. 30 to 332
Males 18 ≤ age < 40 30 to 442
Males Age ≥ 40 30 to 518
The lower limits of 30 are by the NICE threshold of <30 for iron deficiency. Our review of Medichecks data has determined the upper limits. This retrospective study used a large dataset of blood test results from 25,425 healthy participants aged 18 to 97 over seven years. This is the most extensive study on ferritin reference ranges, and we hope to achieve journal publication so that these ranges can be applied more widely.
Both the July and August tests (and my bloods yesterday) were done at around midday, so 5-6 hours after I take my levo. This isn’t the best time from what I’m reading…
You're likely in information overload now - take a breath - and read everything again, and likely again until it makes some sense to you.
We've all been there, and I remember when I felt so desperate and needed to look for answers myself as nothing was forth coming from those who one looks to for help and advise in times of ill health :
Go one step at a time, and ask questions of forum members, and there is a way forward, but likely with a different doctor.
My GP said my pulse was shooting up when I stood up and he suspects it’s either too much T4 or Anemia.
There is no way with the Free T4 and the reference range that you've quoted that you have too much T4.
But getting a fast heart rate (the medical name is tachycardia) with low iron is a known (and common) symptom. In the worst cases it can also cause chest pain which can be mistaken for a heart attack. If that happens, assume it is a heart attack and go to A&E, and also mention your very low iron/ferritin to the hospital staff.
Doctors test for anaemia in the UK by looking at the Haemoglobin level which is part of a Full Blood Count. There are several types of anaemia, and some of the most common are caused by low levels of nutrients :
Low iron/ferritin (iron stores)
Low vitamin B12
Low folate
The problem with the way that anaemia is diagnosed in the UK is that people can become iron, ferritin, B12, or folate deficient long before they become anaemic, and doctors think that deficiencies aren't terribly bad if the patient isn't anaemic, and they don't consider treating such deficiencies to be very important. But it makes a HUGE difference to how well people feel.
When my iron was below range, my ferritin was deficient, and my haemoglobin matched the bottom of the range my doctor was angry with me when I asked for a prescription for iron supplements. I remember the prescription being slammed on the desk in front of me.
But, coincidentally, that same day I discovered by accident (courtesy of a pharmacist) that prescribed iron supplements can be bought without prescription in the UK, in pharmacies only. So from then on I treated myself. I absorb iron poorly and it took me seven years of treating myself at therapeutic dose, and later on with maintenance doses, before my iron and ferritin stayed at good levels without treatment. I still monitor my iron and other important nutrients once or twice a year without seeing a doctor. To be rid of the hassle and to not have to justify myself is bliss.
Edit : Since I fixed my own iron, better and more effective supplements than those prescribed by doctors have become available. I would suggest learning about haem/heme iron supplements (e.g. Three Arrows) rather than the iron salts doctors prescribe, at least at the start, because most people who've tried haem supplements have improved their iron/ferritin much more quickly that they ever have done with iron salts. There have been a few people who still need iron salts to improve their iron.
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