I had a complete thyroidectomy in 1990 . It went haywire when I was pregnant and until 2015 I was fit and healthy on 175mg thyroxine daily. Then it became irratic and I’ve struggled since with several changes to my thyroxine. I’ve just had the dose lowered again from 125mg daily, to 100mg but I’ve got something else going on I think, which could be contributing to my feeling so awful at the minute.
My Haemoglobin, Red blood cells and Haematocrit (no idea what that is or if it’s relevant) are below range, although only slightly and private “well woman” blood tests have shown the same for the last three years. The doctor said this shows that it is just “ my normal” but I asked her to look again at my results as I am so tired and freezing cold all the time (I have Raynauds too) . I’m struggling with IBS too so I think I’m just run down.
The doctor repeated my bloods and now says that I have mild anaemia and she will call me in for a review but it will take weeks as they have a large back log.
I’ll post my blood and thyroid results. I had it taken early morning and I had no thyroxine beforehand. I use the same brand of thyroxine continuously.
I have a really good , varied diet so I’m baffled as to how I could have even mild Anaemia. Might it be linked to my thyroid?
I’m afraid that despite having thyroid issues for so many years, I’m still absolutely rubbish at understanding how it all works! I would have thought that by not having a thyroid gland at all, my condition would be more easily managed by thyroxine. Obviously I’m very wrong in my way of thinking there.
The only supplement I take is Vitamin D daily.
I wondered if I should buy a supplement such as Vitamin B Complex to help me cope with the tiredness? Do you think that might help? I just want to stop feeling so wiped out all of the time.
Any advice would be very much appreciated.
TSH 0.06 mlU/L (range 0.27-4.2)
T3 4pmol/L (range 3.1-6.8)
T4 20.6 pmol/L (range 12-22)
Serum Folate 5.8 ug/L Normal
Serum Ferratin 61 ug/L Normal
Vitamin B12 245 pmol/L (range 115-1000)
Haemoglobin 116 g/L (range 120.0-160.0)
Red blood cell count 3.66 (range 4.00-5.20)
Haematocrit. 0.356. (range 0.360-0.460)
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It looks like you aren't converting T4 to T3 very well, hence the symptoms. Your B12 is on the low side as is your folate. You likely need sone T3 as well as sorting low vit levels.
Despite amazing diet, people who are hypo get low stomach acid and so don't absorb vitamins well. Low vitamin levels mean our thyroid hormone doesn't work well. We need to keep on top of this by supplementing.
The thyroid is a major gland and likened to the body's engine, and the regulator of full body synchronisation which includes your physical, mental, emotional, psychological and spiritual well being , your inner central heating system and your metabolism.
When metabolism isn't sitting quite right for the individual the body can struggle extracting key nutrients from your food, no matter how well and clean you eat and this in turn can cause vitamin and mineral deficiencies and also compromise how well you can convert the T4 thyroid hormone replacement into T3 which is the active hormone that runs the body and causes all the symptoms hypothyroidism, some of which you mention.
T4 is inert, a pro hormone, and needs to be converted by the body into T3 which is the body's active thyroid hormone and said to be around 4 times more powerful than T4.
In order for any thyroid hormone replacement to work well in the body we need a strong core strength and that means maintaining ferritin, folate, B12 and vitamin D at optimal levels
I can't see a vitamin D level - I now aim for around 100 :
my ferritin at around 100 :
and yes your B12 is very low and this and folate need building - I now aim for a folate at around 20 and serum B12 needs to be least over 50% through and suggest 500 ++ :
Why were your doses of T4 - Levothyroxine reduced ?
It is imperative that you are dosed and monitored on your Free T3 and Free T4 readings and not a TSH - though fully appreciate in primary care this may well be all you ever got - as I too haven't a thyroid due to RAI ablation for Graves in 2005 and was dosed and monitored on just a TSH reading and became very unwell.
Do you have Graves and why you had a thyroidectomy ?
Hi Pennyannie. I’ll be honest…I’d never heard of Graves’ disease since I found this site a few weeks ago. I’ve spent hours, reading all the comments and I’ve learnt more than a doctor has ever told me! I was 25 when my thyroid “broke”. I’d just given birth and I couldn’t stop losing weight. I had shaking hands and all the symptoms of graves but that name was never mentioned to me and of course we didn’t have all the internet knowledge that we can access today. It was simply “too overactive” and I only weighed 6 stone when I had my operation. I was very poorly.
In answer to your other question… my thyroxine was lowered again last week because my TSH showed I was overmedicating, the doctor said. I told him that I felt so poorly the last time he lowered it to 100mg but he said if I break my hip in five years time, it won’t heal if I carry on taking too much thyroxine. He’s asked me to have another test in 12 weeks.
the doctor said. I told him that I felt so poorly the last time he lowered it to 100mg but he said if I break my hip in five years time, it won’t heal if I carry on taking too much thyroxine.
I'm sorry but you doctor is not helping you one iota :
You do not need another blood test in 12 weeks rime :
You do need a doctor who knows how to treat a thyroid health patient - and the basic is a TSH + Free T3 + Free T4 reading - and you track on the Free T3 reading:
Hi there, so sorry you are feeling so unwell. Your situation is the same as mine, thyroid went completely haywire after the birth of my first son 36 yeara ago, I was 34 years old. My friend used to call me the incredible shrinking woman as I lost so much weight.I shook all the time and was constantly hungry - awful time. Once the GP discovered what was wrong and I had all the medication to slow everything down then the decision was made to remove my thyroid. It was in such a mess that they managed to get 7/8ths removed and that was that. I, like you, never had Graves mentioned infact I was never given any information about my condition and in those days nobody asked or questioned the consultant. I was left for almost 2 years without Levo as my GP told me that the 1/8th of thyroid left would do thr job. Never been so ill while looking after a now 15 month old. Eventually given the Levo but took a long time to start feeling better. My GP only interested in TSH like many on this forum, its just not good enough. I take 100mcg of Levo per day and have to fight to stop it being reduced at every blood test as my TSH is slightly under range - now, I just refuse. This forum and all the help and advice is a lifeline , if you let yourself be guided by people who have more knowledge about our condition it will be such a help and gaining knowledge for yourself is fantastic. Good Luck and Good Health.
Hi. Thank you for your lovely message. I can’t believe the sheer volume of knowledge on this forum and I’m so pleased I put my post on here yesterday. Not that I understand it all but it’s so much clearer to me now.
I was told that they had removed 4/5th’s of my thyroid and I spent years thinking I had a small amount left.
Then I had a neck scan for a small lump about three years ago and was told that I had nothing there at all. I was really shocked!
If find it draining going into battle with the GP all the time but I’ve never been armed with the correct knowledge. I am now though so I’ll see what the next few months bring, once I sort my B12 etc out.
I can’t believe you were left without any medication. That must have been so awful. Well I’ll post again with an update and I wish you all the best too.
Well, I've never been scanned - ever? I remember being quite ill a few years ago and GP sent me to local hospital assessment unit. They ran through my medical history and a very nice consultant( not an Endo) told me that if I had any thyroid tissue left after operation it would have shrunk to nothing now or be useless anyway. Some people on the forum who have no thyroid take Levo and T3 meds but I've never been offered anything exceot Levo. Others on the forum have to self medicate, go their own way totally to get well - its quite a shameful situation . Funny thing is, I had never questioned the Drs treatment, believing niavely that they knew best - what a fool I am. The members on this forum know more than any Doctor I have ever seen, they've walked in our shoes, they know how it feels. I dont pretend to understand a lot of it but never feel I can't ask what I feel may be seen as stupid question - ask away. Please post your updates, let us know how you are getting on and ask your questions. Take care.
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)
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.
Note that improving folate when B12 is very low is not a good idea. Taking folate before B12 is at higher level can lead to severe neurological problems.
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
Thorne currently difficult to find at reasonable price, should be around £20
If you want to try a different brand in the meantime, one with virtually identical doses of the ingredients, and bioavailable too, then take a look at Vitablossom Liposomal B Complex. Amazon sometimes has it branded Vitablossom but it's also available there branded as Yipmai, it's the same supplement
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
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and continue separate B12
Currently your T4 is at around 86% through the range but your T3 at only 25% through the range and your are struggling to function.
We generally feel at our best when our T4 is up in the top quadrant as this should convert to a decent level of T3 at around 70% and in the middle 5's.
The accepted conversion ratio when on T4 monotherapy is said to be 1 / 3.50 - 4.50 with most people feeling at their best when they comes in this range at 4 or under:
So to find how well you are converting the T4 into T3 we just need to divide you T4 by your T3 and I'm getting yours coming in at 5.15 : so very wide from centre and showing very poor conversion of T4 into T3.
Unquestionably once your B12 and folate are improved and with your ferritin nudged up to optimal your conversion should improve.
No thyroid hormone works well until core strength vitamins and minerals are optimal and conversion can also be compromised by inflammation, any physiological stress ( emotional or physical ) dieting, depression and ageing.
A fully functioning working thyroid would be supporting you daily with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.
Some people can get by on T4 - Levothyroxine :
Some people find that at some point in time find T4 seems to stop working for them and find that by adding in a little T3 - to the prescription - they feel much improved - and probably just replacing that little bit lost when they lost their thyroid gland.
Some people can't tolerate T4 and need to take T3 - Liothyronine only.
Whilst others feel improved taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroids dried and ground down into tablets referred to as grains and used successfully for over 100 years and the original treatment for hypothyroidism.
Currently your doctor can only prescribe T4 and should you wish to try alternative treatment options you will need a referral to an endocrinologist.
Sadly for thyroid health treatment we seem to going backwards as 20 odd years ago your doctor all these treatment options readily available on prescription in his box of tricks.
This recent paper shows the GP is out of date with their concerns about Low TSH / bones .
They won't agree they are out of date ~ because the N,I,C,E, NHS thyroid guidelines they follow are also behind the times on this subject , but just do you know . healthunlocked.com/thyroidu... longterm-subclinical-hyperthyroidism-does-not-affect-bone-density-in-patients-having-had-thyroid-ablation-for-cancer
basically it shows no significant long term bone loss when TSH is kept deliberately supressed while fT4 is kept in range.
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to be continued...
but will post this now and add the rest later , my dinner has arrived
This paper was used to make the NHS guidelines .. it is part of their evidence base that 'low TSH is risky for bones / heart '
However when read more carefully it says TSH below 0.03 increased risks , but TSH that is 'low but not supressed' 0.04 to 0.4 did NOT .
academic.oup.com/jcem/artic...Serum Thyroid-Stimulating Hormone Concentration and Morbidity from Cardiovascular Disease and Fractures in Patients on Long-Term Thyroxine Therapy
Robert W. Flynn, Sandra R. Bonellie, Roland T. Jung, Thomas M. MacDonald, Andrew D. Morris, Graham P. Leese
"Abstract
Context: For patients on T4 replacement, the dose is guided by serum TSH concentrations, but some patients request higher doses due to adverse symptoms.
Objective: The aim of the study was to determine the safety of patients having a low but not suppressed serum TSH when receiving long-term T4 replacement.
Design: We conducted an observational cohort study, using data linkage from regional datasets between 1993 and 2001.
Setting: A population-based study of all patients in Tayside, Scotland, was performed.
Patients: All patients taking T4 replacement therapy (n = 17,684) were included.
Main Outcome Measures: Fatal and nonfatal endpoints were considered for cardiovascular disease, dysrhythmias, and fractures. Patients were categorized as having a suppressed TSH (≤0.03 mU/liter), low TSH (0.04–0.4 mU/liter), normal TSH (0.4–4.0 mU/liter), or raised TSH (>4.0 mU/liter).
Results: Cardiovascular disease, dysrhythmias, and fractures were increased in patients with a high TSH: adjusted hazards ratio, 1.95 (1.73–2.21), 1.80 (1.33–2.44), and 1.83 (1.41–2.37), respectively; and patients with a suppressed TSH: 1.37 (1.17–1.60), 1.6 (1.10–2.33), and 2.02 (1.55–2.62), respectively, when compared to patients with a TSH in the laboratory reference range. Patients with a low TSH did not have an increased risk of any of these outcomes [hazards ratio: 1.1 (0.99–1.123), 1.13 (0.88–1.47), and 1.13 (0.92–1.39), respectively].
Conclusions: Patients with a high or suppressed TSH had an increased risk of cardiovascular disease, dysrhythmias, and fractures, but patients with a low but unsuppressed TSH did not. It may be safe for patients treated with T4 to have a low but not suppressed serum TSH concentration.
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So ~ since your TSH was 0.06 on 125mcg Levo you did not actually have any increased risk of developing heart or bone problems on that dose .... and since your fT4 was in range at about 20 [12-22] and your fT3 was quite low in range ... you could use this study to argue to keep your does at 125mcg . (you will have to argue quite strongly , and show you 've understood and accept 'the risks' as they see them to reassure the GP you won't sue them if you break your hip while having a stroke ,... and show you are aware of the signs of overmedication and would of course want to reduce your dose if you felt any of them ~ feeling too hot. sweating , faster heart rate , over frequent bowel movements , fine tremor in the outstretched fingers etc )
or ~ you could negotiate a compromise ~ since you felt naff on 100mcg when it's been tried before the GP could try 112.5mcg for a few months instead ~ (it is common practice to prescribe alternate dosing of 100mcg one day/ 125 the next /100/ 125 etc to get this dose s ~ some of us prefer to take the same each day so we cut the 25 mcg's in half to take 112.5mcg each day )
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For a list of other useful posts discussing 'Low TSH / Risk vs Quality of Life' see my reply to this post ( 3rd reply down) healthunlocked.com/thyroidu... feeling-fine-but-TSH-is-low
It's what we all have had to do as this is a patient to patient forum and we tend to come back on, to give back, when we see ourselves how you can improve much of this for yourself and become your own best advocate.
I found the following book very helpful - Your Thyroid and How To Keep It Healthy - written by a doctor Barry Durrant-Peatfield it is written for patients to better advocate for themselves and a relatively easy read compared to so many other medial books I opened and simply explains how the whole body works as one, causes and effect and basic body physiology.
Thyroid UK are the charity who support this forum and where you can also read around all things thyroid as well of course reading other peoples questions and answers.
I feel so much better after reading all this information and I have spent this evening making notes of all the tips and advice that I’ve been given, even though I know I can keep returning…and I will.
I have ordered supplements…made a note of helpful foods that I can increase in my diet and I will order a private blood test further down the line to see how things have improved. Once that shows that I have good levels of everything I need to keep my thyroid at optimal performance….if it’s no better and my T3 is still low….I will consult someone with better Thyroid knowledge, as to how best to move on.
Thank you for all the help I’ve received. Everyone is so kind, taking the time to help me.
I was so down this morning but I feel much more optimistic now.
Yes, I think just finding out that it isn't ' just you ' is a massive relief and also knowing that you can take back some control is empowering :
Keep reading and learning :
If you want to look more closely at anyone - simply press the icon alongside their name and go their profile page where you can read their bio and all thy have ever written on the forum - similarly to recap on your progress go to your bio - just press th icon top right on this page where it says ' More " .
Thyroid UK is the charity who supports this patient to patient forum and there again you can read around on the website all things thyroid related for better health.
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