I have started a slow recovery from a thyroid health crises.
Saw endo for 2nd time (recently got referred - been hypothyroid patient 28 yrs, no problems), these were results
Tsh. 1.7 (0.20-4.20)
FT4 16.2 (9-26)
T3 3.7 (2.8-7.1)
B12 = 379 (sorry, no range given)
Endo increased levothyroxine from 75mcg (been on it 6 mths - he had advised to get baseline, previously on 125mcg more than 10 yrs).
Endo suggested I buy a really good, B Complex. One that includes folic acid and vit c.
I became levothyroxine toxic after taking prescription codeine for prolapse discs and sciatica prior to crises, so need to go slow and carefully, introducing meds, vits, minerals...
I would appreciate any advice. Thank you.
Written by
Supul
To view profiles and participate in discussions please or .
I would go for a B Complex containing methylfolate rather than folic acid (folic acid has to convert to folate). I don't know of one containing Vit C but you can supplement Vit C anyway, it's good for us Hypos as it supports the adrenals. I like Thorne Basic B, it contains 400mcg methylfolate and has all the active forms of the ingredients.
As for your thyroid results, why did the endo want a baseline? Did he take you off Levo altogether for that? After 10 years on Levo that would be a pretty cruel thing to do and I expect you felt dreadful. How much did the endo increase your Levo based on those results? Hopefully only 25mcg as that is how much increments should be. An increase was certainly in order with those results. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo if that is where you feel well.
Thank you for your response. I am feeling so low currently, I'm so worn out, trying to understand what has been/is happening to my body.
I have followed you for awhile. I think you are so kind, compassionate, and understand the plight, and fight, us thyroidees endure....
I have no idea why he recommended B Complex. But, I keep thinking, when I get stable thyroid, I'm going to sort vitamins and minerals because I have read a lot here.
I've been let down by NHS for so long.... I suffer, suffer so much with NHS system... I'm probably the only person in UK who can't wait for it to collapse.. sorry, to all NHS lovers. It has not served me well, as a person with thyroid dysfunction. It's all such a battle!
I know I'm a good person, though, I feel I am seen as a hypochondriac, a nuisance, to so many medics, who do not understand thyroid issues; what is invisible to them (suffering).
Consultations have got worse (in my opinion), with team work philosophy. Over, and over, we explain. Every different team member, a different idea of what is best, for the patient.. no consistency with medical carers..
WHERE IS THE THYROID PATHWAY????? WHY ARE WE DUMPED IN DIABETIC CLINICS? (My recent appointment letter invited me to diabetic clinic!!!).
I used to believe in Jeremy Hunt vision... a new, better system..... Nowadays, I sit (for so long), in waiting rooms, thinking, I bet Jeremy Hunt doesn't ever have to wait. Doesn't ever, have to be given the run around, pushed from pillar, to post, judged, viewed as looking ok.... hypochondriac.... no treatment plan....
Too many cooks in the kitchen of NHS! not one chef! (coordinator to oversee source of issues - thyroid dysfunction!). I've been sent to orthopaedic, coronary, dermatology, neurological, etc... ridiculous!!!
Sorry, I have so digressed! In your response, you really have shown more concern than any one of those highly paid medics...
I will be buying your recommended product tomorrow.
In answer to your question, I was on baseline levothyroxine (as I have suffered GP ignorance, never tested for autoimmune, wasn't allowed thyroid blood test year wasn't up), after seeing Dr Peatfield.
I had gotten an ultrasound and bloods from London Drs who diagnosed autoimmune thyroid. I was told my thyroid had died.
I booked an appointment with Dr Peatfield, after reading his book (crying my eyes out!). He got my tsh from <0.01 to 4.57 and immediately put me on adrenavive as well as metavive.
Unfortunately, I got other complications, infections, another autoimmune disease diagnosed, lesions on the liver... New GP was annoyed I was not taking levothyroxine, and had come off levothyroxine.
Rheumatologist was annoyed I wouldn't continue with autoimmune suppressant meds (my view was my immune system needed help, not suppressing!). I had bought vitamin c and vit d as well as omega 3,6,7.
Eventually, I gave in, confused, unable to get out of bed, my husband phoned hospital and I got seen by endocrinologist (1st time 28 years!). He immediately stopped glandular meds, I was back on levothyroxine.
No explanation of what had happened to my body. I have no understanding. I have become a passive (desperate), patient again. Having to do what I'm told, with no reason given.
I nearly lost my marriage, my mind, my spirit..
HU members and admin are my crutch, all the way.
Thank you for taking the time to support me. The readings I gave you are perhaps, the best I've had in 4 years. For 25 years, I managed fine on levothyroxine. I will never understand why my GP let government guidelines dictate that my thyroid bloods needed checking.
Thank you for your kind words, Beechytoes, they mean such a lot to me, right now.
As you can tell, I feel very low at the moment. It all seems such a fight, getting what I need for thyroid stability. Problem is, right now, I just don't have any energy to fight.
All the members on H U, that understand such a plight, help me to realise I'm not alone. I will come through this.
I've only found this site by accident, or thankfully, right? No one I know understood me, I was complaining, lonely, gaining weight, all the problems only this site recognizes. I know, you get it, but your at such a length of years being &feeling icky/not listened to. Please, keep posting, so others that understand can give you support. In a way, it at least let's me/us feel like we can help somehow, as we understand. Sending u positive thoughts to a better day♥️
Easy to swallow, very good quality ingredients. Full dose is two per day, but that makes it easy to start with just one per day (after breakfast) and see how you get on
There is never a justification for an endo to "get a baseline" by taking people off thyroid meds. Would he take his type 1 diabetics off all their meds to prove that they really needed them? Of course he wouldn't. But for some reason endos think that torturing hypothyroid women is a perfectly reasonable course of action, and the idea that they may trigger a coma doesn't seem to occur to them. If an endo wants to know how well your body is doing with a particular dose of Levothyroxine, then all he has to do is a full thyroid function test and ask you what symptoms you have, if any. But of course, they almost never do full thyroid function tests and they don't give a damn how hypothyroid patients feel.
You mention being let down by the NHS - I can sympathise and empathise on that because I was too, for about 45 years. I disagree about wanting it to collapse - instead I want a medical profession that doesn't automatically assume that every female is a hypochondriac, a liar, a drug-seeker, and an attention-seeker, who is also depressed and anxious. And that is unlikely whatever the health system is.
If you get to the end of your tether with the doctors it is possible to treat yourself (at the moment anyway - I don't know what Brexit will do to that). You don't always need a prescription either. If you get to that point then you need to write a new post and ask for advice.
Good luck.
P.S. The reason we are dumped in diabetic clinics is because both diabetes and hypothyroidism involve hormones, so endocrinologists deal with both. Unfortunately a lot of them know zilch about the thyroid, and turn out to be diabetes specialists who are worse than useless.
Indeed! Please do not go off thyroid meds to get a “baseline,” you will have to live through every day feeling miserable not the Endo. I lost 2 years of my life doing that experiment, don’t get bullied to do the same!
At first the endocrine said 3 months. Then said his clinics are so full; gave me a 6 month appointment. He did write to GP though saying give me dose increase if I request as may not be on enough levothyroxine.
After three months I saw prescribing nurse at GP who refused dose increase saying she would need consultant letter!! I left GP surgery, phoned hospital, spoke to consultant understudy who txt me tsh 2.57 (0.27-4.20), was in range.
For the last 3 months (bringing me up to the 6 months), I have felt so unwell. Bone and muscle pain, mobility poor, digestive issues, brain issues, sleeping afternoons and all night. Then, to top it all, I smashed my head on a massive construction (council property in the woods), that was hidden from public with no safety warning! I am still taking many pain relief meds four weeks on!
Well, this week I got to 6 month appointment with endo. I was given prescription for dose increase. I could have cried. That simple! What a farce, what a run around, for a 2 minute job! Been advised take 75 one day, 100 next day (I think, can't retain instruction, pharmacy no he, nothing about it on packet, but I remember being td need go slow for 2 weeks), so, I have had one 100 mcg thus far.
I used to be a loving, giving, kind, understanding person. Since the thyroid crises I am beginning to lose my identity. The NHS system regarding thyroid has left me shocked, bewildered, confused and I'm experiencing some anger this week.
Sorry Andy, as you can note, I am so feeling utter despair, trying to get what I need.
Thank you. Without HU members, I think many of us would be melodramatic, cretin, all the stuff we had hoped was nowadays seen as archaic practice.
I know. Your right, the NHS needs to be better regarding thyroid health. However, I don't believe it will improve whilst good salaries are assured.
I believe if consultants were self employed, had their own business, patients would choose only good, knowledgeable, compassionate medics. The public would vote with their feet.
Perhaps, patients should be given tokens and spend them where we see fit! Though, ill health, and care provision, is a very Complex business, geographically too.
The difficulties for me, have been too many NHS people involved.
I was ok following advice of the endo, I think he is understanding knowledgeable, gave me a plan, including increase dose if I felt I needed it, though had to go to GP for the increase (that's where the plan fell down).
GP surgery now directs patients to prescribing nurse.
Prescribing nurse looks at tsh and says no, no increase necessary.
I phoned hospital, they put me through to endo understudy, as endo busy.
Understudy looks at tsh says in range, so no increase......
As Andy says, and I'm sure you, and many here have experiences similar?
Despite all the other colleagues, getting involved in my endo care, I didn't get what my body needed, a dose increase.
The endo was not happy about this. He showed me the letter GP would have had from him, advising increase if I felt I needed it. How can he make them follow his instruction when they are just looking at tsh?
My husband is self employed, and his customers are truly at the centre of his business. No customers no business!!!
My husband keeps a check on customer journey. Delegates, but ensures the customer got what they need and were happy with the product and the service. Only then, does he get paid enabling him to close the file feeling content. As his customer is satisfied.
Yes, diabetes another endocrine dysfunction, yet the patients get proper clinics, with specialist nurses; nutritional advice, exercise advise, regular bp, pulse, blood, bmi, pyschological skin checks, wound treatment. Where is the thyroid nurse specialist?
Thank you so much for your response. I have been feeling pretty miserable for so long. I will take vitamins and minerals and the increase in levothyroxine. If no significant improvement, I will start finding alternative treatment.
Would strongly suggest you get full private testing of thyroid and vitamins 6-8 weeks after this recent dose increase in Levothyroxine
You are now on 100mcg and 75mcg alternate days. Is that correct?
It's likely it's still not enough, but as you say you need to go slowly while you recover
On Levothyroxine many of us need TSH low, below one, with FT4 towards top of range in order to have high enough FT3
Very important to test FT3 and vitamin D, folate, ferritin and B12
When you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results
You could test vitamin D now via vitamindtest.org.uk £29 NHS postal kit
Or is slightly cheaper if you include it in full testing in 6-8 weeks
For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus very important to test vitamin D, folate, ferritin and B12
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting. If on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
It can take a very long time to recover from complete Levothyroxine withdrawal. Slowly body recovers and then can tolerate slightly higher dose of Levothyroxine as vitamins improve (it took me a year to get full mobility back after 2 week withdrawal)
There has in recent years been an incorrect obsession by GP's to lower Levothyroxine dose to bring TSH "in range" But for very very many of us that leads to extreme ill health
Levothyroxine dose high enough to give good levels of FT4 often suppresses TSH. Yet if FT4 is not towards top of range then FT3 is far too low
But first step is full private testing in 6-8 weeks after latest dose increase. Getting vitamins optimal is crucial
Come back with new post when you have them
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)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne at
tukadmin@thyroiduk.org
Professor Toft recent article saying, T3 may be necessary for many otherwise we need high FT4 and suppressed TSH in order to have high enough FT3.
As you are already diagnosed (finally ) as having Hashimoto's are you on strictly gluten free diet?
Likely to give some reduction in symptoms too.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Thank you so much, for your thorough, and much informed response, and advice, SlowDragon. I really appreciate what you have said.
I have gone gluten free, and mostly buy organic food. Always prepare and cook fresh food. (Advice from this site). Yes, I was diagnosed AITD, so I also bought I Wentz book, read the Root Cause, and researched her work, after seeing and being treated by Dr P.
The endo appears to be understanding, says I've been very unwell, it will take some time for my recovery. He wrote to my GP saying my thyroid system probably became overwhelmed due to prescription meds, (given for prolapse discs and sciatica).
I do have blood form for 12 weeks time, Tsh, Ft4, Ft3, (and again, 24 weeks time), they include B12, ferritin, folate. No antibodies though or vit d. I have to phone his Secretary for a call back from endo. He will tell me if need change anything.
Endo is aiming for tsh 1. He didn't mention other readings but I feel he is knowledgeable.
He advised me vit d ok 79 (50-100), continue 800iu then winter double dose. He also advised me to begin good quality B Complex. I was going to get Thorne (S.Susie takes), however, wouldn't wait for delivery so tried to get Solgar (many here take it), none in stock! I bought Natures Aid, Alive - ingredients seem ok (in keeping with what I read here I hope). I started them straight away.
I'm taking 75mcg and 100mcg levothyroxine every other day 2 weeks. Then, 100mcg every day.
Worst for me, I smashed my head ducking under low roof, stood up, knocked straight to floor after smashing top of head on (hidden from view), support beam!! It has really set me back. I cried a lot! It's nearly 5 weeks now, still daily headaches etc.
Not sure if Levo reduction had impact, I've been very clumsy, brain fog, joint pain, muscle aches, low.... for months... not sure if (what I consider), low B12 is part of my very poor mobility lately, and more symptoms....
Anyway, I will get back with new results. My intention is get the next 2 app sorted with endo see how I get on, then trust my judgement, and follow great advice here.
THANK YOU! I REALLY COULDN'T HAVE GOT THROUGH THIS WITHOUT HU SUPPORT! (Sorry capitals, but want to shout that from rooftops!). X
Yes personally I don't like Thornes B complex - huge capsules that I can't swallow. Opening to tip powder out, it tastes and smells awful
Jarrow B right is also large capsule, too large to swallow, but at least doesn't taste horrid or smell. Does also turn your pee bright yellow like Thornes
Igennus easy to swallow small pill, no smell or taste and no bright yellow pee either!
It can take long time for B vitamins to pick back up. I had Levothyroxine reduced from 125mcg to 100mcg when T3 was started. FT4 dropped too low and low B12 symptoms restarted. Put Levo back to 125mcg Taken a few months for low B12 symptoms to slowly fade, despite daily B complex (and initially sublingual B12 1000mcg lozenges too)
Useful informative link on interconnection of vitamin D and B vitamins
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Advice on blood results please!
Advice please on blood results
Can anyone help with my latest results please?
