Hi I was diagnosed with underactive thyroid 2013 and wondering when I will feel better on 150mcg levo? I have gained more weight, sleeping more, feeling cold, periods making me anaemic. Feel so lost! Thanks in advance.
TSH 6.2 (0.2 - 4.2)
Free T4 12.9 (12 - 22)
Free T3 3.7 (3.1 - 6.8)
CarlaK What are your latest thyroid test results, please post them with their reference ranges.
Do you have positive thyroid antibodies - Hashimoto's?
Have you had dose changes, if so what was the reason? Can you post results for these?
Have you had vitamins and minerals tested - Vit D, B12, folate, ferritin? What are the levels? Are you supplementing for any? If so what dose?
The more information you give then the more we can try to help.
Thyroid results added, I have positive antibodies so Hashimotos. My most recent dose changes were done September 2017 and June 2017, I will post these.
I will post levels of vitamins and minerals, I only supplement vitamin D 3000iu since the 800iu prescribed to me wasn't raising levels. Thanks
TPO antibodies 304.5 (<34)
TG antibodies 283.3 (<115)
CarlaK
TSH 6.2 (0.2 - 4.2)
Free T4 12.9 (12 - 22)
Free T3 3.7 (3.1 - 6.8)
OK, so you're not going to feel well with those levels. 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. You are undermedicated and desperately need a dose increase of 25mcg, then retesting/increasing every 6-8 weeks until you feel well.
**
TPO antibodies 304.5 (<34)
TG antibodies 283.3 (<115)
So, positive for Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results.
These 'Hashi's flares' can cause you to swing from being hypo to having hyper-type symptoms, and as they are temporary you will eventually swing back to hypo again.
When the antibodies attack, the dying cells dump a load of thyroid hormone into the blood and this can cause TSH to become suppressed and Free T4 and Free T3 to be very high or over range. You may get symptoms of being overmedicated (hyper type symptoms) to go along with these results that look as though you are overmedicated. Unless a GP knows about Hashi's and these swings, then they panic and reduce or stop your thyroid meds.
During these swings, dose adjustment of thyroid meds can help, and readjustment when things settle down again.
Unfortunately, most doctors know very little or nothing about Hashis and how it affects patients, and they dismiss antibodies as being of no importance. So you need to read, learn and help yourself here.
You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.
Gluten/thyroid connection: chriskresser.com/the-gluten...
stopthethyroidmadness.com/h...
stopthethyroidmadness.com/h...
hypothyroidmom.com/hashimot...
thyroiduk.org.uk/tuk/about_...
**
Hashi's and gut/absorption problems go hand in hand and very often dire nutrient levels are the results, and yours below aren't particularly good. I will ask SlowDragon to comment and she will give you information and links to help with the gut/absorption problems.
Vitamin B12 198 (180 - 900)
Folate 2.3 (2.5 - 19.5)
Vitamin D total 56.3 (50 - 75 vitamin D may be suboptimal and long term may lead to clinical effects. Advise on safe sun exposure and diet. Supplementation may be indicated)
Ferritin 42 (15 - 150) last complete blood count and iron panel showed iron deficiency anaemia
Been taking 3000iu vit D since 2014
CarlalK
Vitamin B12 198 (180 - 900)
Folate 2.3 (2.5 - 19.5)
Anything being done about these levels? If not your GP is being negligent as you are folate deficient with very low B12.
Check for signs of B12 deficiency here b12deficiency.info/signs-an... then please post on the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc You may need testing for Pernicious Anaemia, you may need B12 injections, you will need folic acid prescribing but please don't start taking it until further investigations have taken place.
**
Ferritin 42 (15 - 150) last complete blood count and iron panel showed iron deficiency anaemia
For thyroid hormone to work (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range. You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...
As for your iron deficiency anaemia, is this being treated? You should be prescribed ferrous fumarate in accordance with NICE Clinical Knowledge Summary for iron deficiency anaemia treatment (which will be very similar to your local area guidelines):
cks.nice.org.uk/anaemia-iro...
How should I treat iron deficiency anaemia?
•Address underlying causes as necessary (for example treat menorrhagia or stop nonsteroidal anti-inflammatory drugs, if possible).
•Treat with oral ferrous sulphate 200 mg tablets two or three times a day.
◦If ferrous sulphate is not tolerated, consider oral ferrous fumarate tablets or ferrous gluconate tablets.
◦Do not wait for investigations to be carried out before prescribing iron supplements.
•If dietary deficiency of iron is thought to be a contributory cause of iron deficiency anaemia, advise the person to maintain an adequate balanced intake of iron-rich foods (for example dark green vegetables, iron-fortified bread, meat, apricots, prunes, and raisins) and consider referral to a dietitian.
• Monitor the person to ensure that there is an adequate response to iron treatment.
If you are not already prescribed this, ask your GP for the appropriate treatment.
Take each iron tablet with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds and two hours away from other medication and supplements as it will affect absorption.
Once your
ferritin has reached optimal level, and your iron deficiency anaemia resolved, you will need to maintain the levels so you have to discuss that with your GP because generally they just stop treatment altogether and then levels plummet again.
**
Vitamin D total 56.3 Been taking 3000iu vit D since 2014
The Vit D Council recommends a level of 100-150nmol/L and you are a very long way from this. I think the fact that you have been taking 3000iu D3 for 3 years shows that you are not absorbing it properly and I assume you are taking tablets, capsules or softgels. You would be better using an oral spray so that it bypasses the stomach and gets absorbed better. Better You do an oral spray in 1000iu and 3000iu strength.
I would suggest you use 6000iu daily for a couple of months, then drop down to 3000iu daily for a month then retest. When you've reached the level recommended then you'll need a maintenance dose which may be 2000iu daily, maybe less, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/
There are important cofactors needed when taking D3
vitamindcouncil.org/about-v...
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.
Magnesium helps D3 to work and comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds
naturalnews.com/046401_magn...
Check out the other cofactors too.
Better You do a combined D3/K2-MK7 oral spray which you might want to consider rather than taking K2 separately.
Thanks taking better you 3000iu spray. Nothing being done about B12 and folate, meant to be taking iron tablets but they make my stomach feel heavy.
Carla
OK, so you need to go over to the PA forum as advised, post your B12/folate/ferritin/iron deficiency information and they will advise how to go about getting the right help from your GP.
**
As you are already taking the Better You spray, I would increase the dose for now as mentioned. If you are not taking the cofactors then introduce them. Magnesium will help the D3 work. But it is, of course, the absorption problem that needs addressing before anything will help much.
**
As the iron tablets are making your stomach feel heavy then you need to discuss this with the doctor and find an alternative. It does say in the guidelines
If ferrous sulphate is not tolerated, consider oral ferrous fumarate tablets or ferrous gluconate tablets
so your doctor needs to find something that will work for you. Your iron deficiency cannot just be left as it is.
June 2017 (200mcg levothyroxine and 10mcg T3 to 200mcg levothyroxine after results)
TSH <0.02 (0.2 - 4.2)
Free T4 23.1 (12 - 22)
Free T3 6.4 (3.1 - 6.8)
September 2017 (200mcg levothyroxine to 150mcg levothyroxine after results)
TSH 0.03 (0.2 - 4.2)
Free T4 20.8 (12 - 22)
Free T3 4.7 (3.1 - 6.8)
CarlaK
June 2017 (200mcg levothyroxine and 10mcg T3 to 200mcg levothyroxine after results)
TSH <0.02 (0.2 - 4.2)
Free T4 23.1 (12 - 22)
Free T3 6.4 (3.1 - 6.8)
What your doctor should have done with this result is reduce your Levo by 25mcg. How did you feel with this result? Did you feel overmedicated? There was no need to remove your T3 as your FT3 was in range. I am guessing it was removed due to the cost factor, the NHS are trying to deprescribe it and finding any excuse to take it off patients even when they show a clinical need for it.
September 2017 (200mcg levothyroxine to 150mcg levothyroxine after results)
TSH 0.03 (0.2 - 4.2)
Free T4 20.8 (12 - 22)
Free T3 4.7 (3.1 - 6.8)
This result shows exactly why your T3 should not have been removed. Your FT3 plummeted. How did you feel with these results?
If your doctor is using the TSH as a reason for reducing your dose, then he is wrong. See thyroiduk.org.uk/tuk/about_... > Treatment Options:
According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.
The booklet is written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist. It's published by the British Medical Association for patients. Avalable on Amazon and from pharmacies for £4.95 and might be worth buying to highlight the appropriate part and show your doctor.
Also -
Dr Toft 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 article by emailing louise.roberts@thyroiduk.org print it and highlight question 6 to show your doctor.
So probably the most eminent thyroid doctor in the UK is saying you can have a suppressed TSH, even an over range FT4, as long as FT3 is in range.
**
And of course, the reduction to 150mcg Levo only has now produced
TSH 6.2 (0.2 - 4.2)
Free T4 12.9 (12 - 22)
Free T3 3.7 (3.1 - 6.8)
which clearly shows you need more Levo to lower your TSH, raise your FT4 and more T3 to raise your FT3. Increases should be gradual and one hormone at a time, either Levo or T3.
If you had a set of results where you felt best, then that is what to aim for but bear in mind that the Hashi's will complicate things due to the fluctuations of the antibodies.
Thanks with the June results I didn't feel overmedicated at all and I felt worse with the September results. I haven't got any results where I felt best
So you June results were pretty good, perhaps needed a small reduction in T4 from 200 to 175mcgs. Instead they stopped your T3. (Probably freaked at low TSH)
But then when T3 is stopped the vitamin levels crash and we stop being able to use thyroid hormones. Results indicate hyper, but you feel hypo. Dose dropped further and whole cycle repeats it self
Was it different endo that started you on T3 than stopped it?
How did you feel on T3?
Your vitamin levels need serious improvements now, as SeasideSusie has detailed
But also you have Hashimoto's and this affects our gut function and causes leaky gut
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)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms.
thyroidpharmacist.com/artic...
thyroidpharmacist.com/artic...
amymyersmd.com/2017/02/3-im...
chriskresser.com/the-gluten...
scdlifestyle.com/2014/08/th...
drknews.com/changing-your-d...
Low stomach acid can be an issue
Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL
thyroidpharmacist.com/artic...
Other things to help heal gut lining
Bone broth
thyroidpharmacist.com/artic...
Probiotics
carolinasthyroidinstitute.c...
Read as much as possible about Hashimoto's
You are likely to need small dose of T3 reinstated, but not before healing gut and improving vitamins, plus increase in Levo so that TSH is around one
Email Louise at a Thyroid UK for list of recommended thyroid specialists louise.roberts@thyroiduk.org.uk
NHS England were trying to ban T3 due to cost. Patients Association have just published this - see pages 5-8 - very definitely in support of it being still available to ALL patients that need it
patients-association.org.uk...
Same endo but felt no different on T3, I felt I needed the T3 increased rather than it being kept the same all the time
Well if you are not already on strictly gluten free diet that may help (100's on here find it essential)
Plus you need vitamins at very good levels
Levo at high enough to get TSH around one (sometimes lower) and FT4 right at top of range
Avoiding all soya including soya lecithin good idea
Fluoride free toothpaste plus check your tap water doesn't have fluoride added (most don't)
Some with Hashimoto's need to be dairy free or sometimes nightshades - tomatoes,peppers, aubergine
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