Hi guys had underactive thyroid for 28 years after having my first child. Been on a Levythyroxine can’t remember what I started on but I know I was on 300mcg for at least 7 years laterally before my doc of 15 years retired last July, new doctors have now got me down to 150mcg. I feel so drained, hair falling out, constantly freezing, sore head/migraine. Had bloods checked last week and apparently they were fine. ?? I have the print out if anyone can tell me what they need to help me cause I have no idea🤷🏼♀️Xx
Help required please (underactive): Hi guys had... - Thyroid UK
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SlowDragonAdministrator
Welcome to the forum
Clearly that’s an extremely dramatic reduction
First step is to get hold of the actual results and see exactly what has been tested
Frequently only TSH which is completely inadequate
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is 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.
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
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Can see you also have Crohn’s disease....this makes low vitamin levels extremely likely too
What vitamin supplements are you currently taking
Insist GP test vitamin levels
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin
medichecks.com/products/thy...
Medichecks often have special offers, if order on Thursdays
Thriva Thyroid plus vitamins
Blue Horizon Thyroid Premium Gold includes vitamins
bluehorizonbloodtests.co.uk...
Come back with new post once you get results
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, many patients either need high dose levothyroxine and suppressed TSH or if reducing levothyroxine, then addition of T3 may be necessary for many
rcpe.ac.uk/sites/default/fi...
Hi we can’t get our results online as yet, I’ve got my last results printed out from reception. 16/08/19 T.S.H <0.01 FreeT4 20.6 Free T3 3.6 02/12/19 T.S.H 0.03 Free T4 15.6 Free T3 4.5 04/05/19 T.S.H 0.03 Free T4 15.8 Free T3 4.0
Hope this helps xx
Well these results are 8-9 months old so you need FULL thyroid and vitamin testing
Do you have the ranges to add to results please
Figures in brackets after each result
I think the ranges are (0.4 - 1.0 ) I couldn’t find what people were talking about at first as in ranges, but I am also on Lithium and have both lithium ant thyroid bloods checked together so ranges for thyroid I take it are at bottom of printout under heading hrs post lithium then it says 0.8 mmol/l then (0.4-1.0) . Nothing else is i brackets. Thanks
You say you are on lithium
Is this to treat bipolar?
medscape.com/viewarticle/58...
Lithium interferes with the active form of thyroid hormones - T3
Who is treating you
An endocrinologist or a psychologist?
Either way, both specialist endocrinologist or psychologist can prescribe T3 if necessary
Without the ranges on your results no one can advise on your levels ....but Ft3 looks likely low
Typically results and ranges look something like this (but ranges vary from lab to lab)
TSH 1.8 (0.2-4.6)
Ft4 14 (12-22)
Ft3 3.8 (3.1-6.8)
It’s only my psychiatrist who I am lucky to see every 6 months for bipolar and my Gp nurse that checks my bloods every 6 months, I’ve been constantly on at gps telling them about my headaches, hair falling out, being so cold all the time etc my vitamim b12 folate vitamin d etc was checked, my folate was low I was given 6 weeks of folic acid which I thought would make me feel better, that was a few months ago, my symptoms are all still the same, no improvement xx
So your psychiatrist needs to either put your dose of levothyroxine up, add in small dose of T3 alongside levothyroxine and/or ween off lithium
Getting vitamin levels optimal and strictly gluten free diet should help too
NHS will only test and treat vitamin deficiencies. They will not prescribe to bring to OPTIMAL levels
With Hashimoto’s we need optimal vitamin levels to help improve conversion of Ft4 to Ft3
Vitamin D
GP will often only prescribe to bring levels to 50nmol. Some areas will prescribe to bring levels to 75nmol
leedsformulary.nhs.uk/docs/...
GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)
mm.wirral.nhs.uk/document_u...
Deficient is under 25nmol and requires loading dose
Loading dose vitamin D is 300,000iu over 6-8 weeks.thats typically 5000iu per day for 8 weeks or 7000iu per day for 6 weeks. Important to get levels retested at end of prescription
ouh.nhs.uk/osteoporosis/use...
But with Hashimoto’s improving to around 80nmol or 100nmol by self supplementing may be better
ncbi.nlm.nih.gov/pubmed/218...
vitamindsociety.org/pdf/Vit...
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Test twice yearly via vitamindtest.org.uk
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7
It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average
Government recommends everyone supplement October to April
gov.uk/government/news/phe-...
Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamins
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Vitamin K2 mk7
betterbones.com/bone-nutrit...
healthline.com/nutrition/vi...
B12 and folate. Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be more beneficial than just folic acid
chriskresser.com/folate-vs-...
B vitamins best taken in the morning after breakfast
Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks
Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
Low B12 symptoms
b12deficiency.info/signs-an...
B12 injections during Covid crisis
pernicious-anaemia-society....
Low vitamin D and low B vitamins may be linked as explained here
drgominak.com/sleep/vitamin...
In YouTube video when Dr Gominak talks about vitamin D levels ...vitamin D at 40ng/ml (USA units) is equal to 100nmol (UK units)
Ask GP for full iron panel test for anaemia. This includes ferritin and iron
As you have Crohns low vitamin D and low iron and ferritin, folate and B12 is also linked to this
webmd.com/ibd-crohns-diseas...
Sorry should say 04/05/20
Deedee You need to put up the blood results and the ranges so we can comment.
Hi thanks, yeah wasn’t sure what results I put, hope this is correct. This is the latest from 04/05/20 T. S. H 0.03 Free T4 15.8 FreeT3 4.0 not sure what else or if I can give any more info. X
The ranges are the figures after the result ...
TSH 0.03 Range 0.5 - 5.00 - or something similar !
I don’t seem to have the ranges on the printout, sorry xx
Perhaps in brackets after the result?
TSH 0.03 (05-5.00)
If it really was a print-out, the ranges must be there, because they would be on the computer.
I think I’ve found it could it be (0.4–1.0) ??
For a TSH? I very much doubt it. Perhaps for something else, but there should be a different range for every test. And for a TSH it would be more like the example Marz used.
That must be to do with my lithium levels then I get lithium and thyroid checked together, can’t find anything else in brackets or that says ranges, it was only those three figures that I put up that were on bottom row ??
It sounds like a very, very strange print-out. Being on the bottom row has nothing to do with anything. Are these results from your GP or your endo? Maybe ring the GP's receptionist and ask if you can have further details?
Are you taking lithium?
Yes taking lithium, so lithium and thyroid bloods were taken at same time.
OK, so it's the lithium making you hypo.
If the results are from the GP, the ranges will be on the computer, and what you have is not a print-out of your results, or the ranges would be on it. Ring the receptionist and ask. 
Just a thought… without wishing to be indiscrete, are you taking the lithium for depression? If so, it could very well be the other way round, your hypo have been causing the depression and the lithium is just adding to it.
Just noticed that it says page 1 of 2 so looks lie there is a page missing, could the ranges be on the missing page? I take lithium as I have bipolar disorder. These problems I’m having only started when my new gp’s started lowering my Levothyroxine, I understand it goes by bloods but was on 300mcg for years and was fine now after months of it being halved I’ve nothing but problems.
Links about Hashimoto’s being misdiagnosed as bipolar
drknews.com/when-hashimotos...
holtorfmed.com/mental-illne...
thyroidpharmacist.com/artic...
hypothyroidmom.com/miss-dia...
ncbi.nlm.nih.gov/pmc/articl...
ncbi.nlm.nih.gov/pmc/articl...
Strictly gluten free diet helps or is essential for thousands of Hashimoto’s patients
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes 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
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
drknews.com/changing-your-d...
restartmed.com/hashimotos-g...
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
ncbi.nlm.nih.gov/pubmed/296...
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
ncbi.nlm.nih.gov/pubmed/300...
The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease
nuclmed.gr/wp/wp-content/up...
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Ranges are 0.35-5.0 9.0-21.0 3.0-6.0
Ahhhhhhh OK! Now we're cooking! So...
TSH 0.03 (0.35-5.0)
FT4 15.8 (9-21) 56.67%
FT3 4 (3.0-6.0) 33.33%
Put like that, one can see the problem immediately. Your FT4 is too low - most hypos need it up nearer 80%, if not higher, and your FT3 is way below mid-range, too low, and you aren't converting very well. The FT3 percentage should be just a little lower than the FT4. So, in a nut shell, your doctor is an idiot and you are now under-medicated.
It is absolutely flabberghasting just how ignorant GPs can be! They arrive on the scene and the first thing they do, to mark their territory, is mess with your dose of levo - like a dog peeing on a tree. They then find that that causes the patient to develop symptoms, so they start treating each individual symptom as if it were a new disease. In your case, treating your bipolar disorder - a hypo symptom - with lithium, which is just going to make your hypo worse, and at the same time reducing your dose! He couldn't make a bigger c***k-up of things if he tried!
Of course, all he's looking at is the suppressed TSH, and that strikes terror into the hearts of a lot of doctors - GPs and endos - because they don't understand how it all works. They just weren't taught about thyroid in med school, and yet they permit themselves to dictate how it should be treated.
OK, so the first thing that is needed is an increase in dose. Which, of course, is going to be difficult because of the suppressed TSH, and your doctors lack of understand that it might never rise again! For how long has it been suppressed? It could be that the HPT axis has been deregulated and it will stay like that. Which is one of the reasons that TSH should never be used to dose by.
I can't see your photo of results with my old eyes, but are there any nutrient tests on there? Vit D, vit B12, folate, ferritin? If not, your next step should be to get those tested. Treated properly, there seems to be on reason why you shouldn't recover fully, shed the bipolar label and be able to wean yourself off the lithium, and so back to good health.
I shouldn't, but you did make me laugh there! "Like a dog peeing up a tree". Classic.
Thanks I’ve been on lithium since 2011 been on Levothyroxine since 1992, as I’ve said in my original post the doctor I had must have had some savvy keeping me on 300mcg it’s when he retired last July and I had to get new doctors (7 of them in the practice rather than dealing with one that knows my full medical background. Now on half the dose of Levothyroxine nothing but problems. Had vitamin levels checked, my folate was low got 6 weeks of folic acid had high hopes but not one symptom any better, b12 well in range, but d ok etc. I have crohn’s even told my gastro consultant he was disgusted gps not helping he arranged a CT scan to check for abnormalities because of my headaches, thankfully it was normal.
Just saying 'in-range' and 'ok' is meaningless. If you have the actual numbers - results and ranges - post them, and let's have a look. Just taking six weeks of folic acid is not likely to help much. Folic acid is not well absorbed, you need methylfolate. And if you stop taking it after six weeks, it's likely to just drop again. And, if your folate was too low, the odds are that your B12 was too low, also, even if it was in-range, and that is going to cause terrible hypo-like symptoms.
Of coure, if you need 300 mcg T3, just taking 150 mcg is going to make you ill. That is pretty obvious. But, as I said, your doctors are only looking at the TSH and have no understanding of thyroid. If there are going to be any changes in attitude, they have to come from you. You have to stand up to these idiots. And, if you really need 300 mcg levo to make you well, there is bound to be one of three problems at work - or maybe all three:
a) you don't absorb it very well
b) you don't convert it very well
c) you don't absorb very well at a cellular level
But, obviously, none of your doctors are going to understand any of those problems. We've seen, using the ranges, that you don't convert very well.
But even so, you don't appear to absorb very well, either. How do you take your levo? Do you take it on an empty stomach and wait at least an hour before eating or drinking anything other than water? And at least two hours before taking any other medication or supplements?
As for absorption at the cellular level, it would be necessary to see your results on 300 mcg levo to know about that. Do you have any?
Of course, the danger is that they will just keep reducing your levo to try and force the TSH to rise. They are obviously ignorant enough for that. But, as I said, if it's been suppressed for a long time, it will probably never rise again. So, something drastic needs to be done. Can you possibly change surgeries? And, what about your psychiatrist? They often have a better understanding of thyroid than GPs - or even endos. Have you tried asking him about the possibility that your bipolar is just a symptom of low thyroid?
Not sure where your located I’m in central Scotland, your lucky if I see my psychiatrist twice a year unless I have a major episode, not once has he mentioned my thyroid, kidney checks etc I’m supposed to have done and written up in a book, he just checks my lithium level is ok and this has only been the last couple of times as I didn’t even have a book!!! You never really know who your going to see but the last couple of times it’s been the same psychiatrist, it’s awful, honestly
I can imagine it must be. I live in France and I self-treat, so I avoid all that hassle. But, even here, most doctors I've seen would have just liked to pass me on to a psychiatrist and be done with me. It's something I've always resisted, because I know that there's nothing wrong with my 'mental health', and any problems I've had in that way have been down to mistreatment of my thyroid condition. I would never let a psychiatrist get his claws in to me!
That said, I have read on here about a lot of psychiatrists that treat depression with T3.
Have you never considered self-treating? It would be easier for you in the UK than it is for me, here in France.
Once the doctors are up and running again after this lockdown I have a few issues I need seen to, if I have no joy with them I will need to have a serious think about what to do, with me unfortunately the issue would be money as I am a single parent on benefits, thankfully my daughter is amazing she is 14 and helps a lot with my care. I really appreciate all your advice, you have been so helpful, I will be passing it on to my doctors, take care and stay safe. Denise xx
Well, don't be surprised if your doctors laugh in your face, or get angry. They just don't want to know.
Stay safe.
Results from GP
Looking forward to seeing your results with ranges ... Do you have Hashimotos ?
I have no idea, sorry I just know I developed an underactive thyroid after the birth of my daughter 28 years ago and was put on Levothyroxine, got regular blood tests and until discovering this amazing forum I discovered how complex thyroid problems really are so I’m just learning after all these years that it could be contributing to other problems. Xx
Yes Docs like to keep you in the dark when it should be a team effort.
The above link takes you to the main website of this Forum where you can read and learn most things thyroid.... keep asking questions !
got my last results printed out from reception. 16/08/19 T.S.H <0.01 FreeT4 20.6 Free T3 3.6 02/12/19 T.S.H 0.03 Free T4 15.6 Free T3 4.5 04/05/19 T.S.H 0.03 Free T4 15.8 Free T3 4.0
SlowDragonAdministrator
Take a photo of results (make sure to hide personal details like name and DOB ....add photo to the original post
Click on the small down arrow bottom right that says “more”
Choose Edit
Add photo
Done, thanks for your help would not have known how to do that xx
SlowDragonAdministrator
See GP and request vitamin D, folate, ferritin and B12 are tested
Plus coeliac blood test
Had it done b12 was well in range, was put on 6 weeks of folic acid which I thought would help as folate was low but that was a couple of months ago and still feel awful xx
SlowDragonAdministrator
So results show
May 4th
TSH 0.03 (0.35-5.0)
Ft4 15.8 (9-21)
Ft3 4.0 (3.0-6.0)
Difficult to read the ranges ...can you confirm those figures are correct
You need Vitamin D and ferritin tested
Yes that is correct, I see the ranges now under where it says T.S.H, Free T4 and Free T3. I know I had a lot of vitamin tests a few months ago that’s how they found out I needed folic acid, I’m sure vitamin D was tested, don’t know about ferritin or what it is, if it’s a regular nhs test along with b12, folate etc I would have had it checked. If I wasn’t a struggling single parent I would go private, my gp’s are just not much support, even before Covid xx
So if ranges are correct
Ft4 is 57% through range
Ft3 only 34% through range
Helpful calculator for working out percentage through range
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
nhs.uk/medicines/levothyrox...
Also note what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
So, you need 25mcg dose increase in levothyroxine to raise Ft4 , like many with Hashimoto’s, you are poor converter of Ft4 to Ft3
Getting vitamin levels optimal frequently improves conversion and symptoms
Insist GP tests vitamin D, iron and ferritin
Best thing I ever did was move to NDT. Not sure if I’m allowed to mention a brand I heard about?
There have been a lot of experiments done on treating bipolar with a ketogenic diet. People often go into remission. If you do a search for "bipolar and ketogenic diet" you'll get lots of info.
I have also read that ketogenic diets have been useful for treating people who are autistic, those with ADHD, and those who are schizophrenic. A lot of people who go on keto diets also say that they cure their depression and anxiety.
It would seem that many brains work a lot better when fuelled by ketones rather than glucose.
Ketogenic diets have been around for decades - they aren't new. And lots of people do very well on them.
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