Several months ago (august), my GP increased my Levothyroxine from 100 to 125mcg and I felt Ok for a few weeks but since then I have been having horrific hypoglycaemic crashes (I'm not diabetic).
I went to the GP when I was on 100's because I was constantly fatigued and unwell and my GP increased my Levo to 125mcg based on TSH results. I was getting hypoglycaemic crashes on the 100's but it seems worse since increasing to 125mcg!
So, I stopped taking the Levo 2 days ago to see if it would help with these symptoms as I feel really unstable.
I have been on Levothyroxine for 10+ years and never felt good.
A few years ago, I was diagnosed with Histamine Intolerance by an allergist due to terrible symptoms after eating/ drinking anything. I regularly take antihistamines and H2 blockers to counter some the effects of this but at the moment I cant get stable. The last 5 years has just been a life of chasing symptoms and really only a few days here and there that I can feel really well and good enough to get out and have a life.
Please can you advise on what Vit D supplementation I can take to get my levels up, without having to go to the GP (nightmare as you well know!)?
P.S I have been on Levothyroxine for 10+ years and never felt good.
I would really appreciate any help with interpreting these results?
Thank you
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Elm27
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What brand(s) of Levo do you take? It's best to stick to one brand, not mix brands, even if it means splitting a tablet or alternating doses to achieve a daily average. Many people have bad reactions to Teva brand.
TSH: 3.74 (0.27-4.20)
FT4: 14.8 (12-22)
FT3: 4.88 (3.1-6.8)
These results show that you are undermedicated. The aim of a hypo patient generally, when on Levo, 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 reference ranges, if that is where you feel well. Your TSH is far too high, your FT4 is only 28% through the range and your FT3 is 48.8% through range. You need an increase in your Levo, 25mcg now, retest in 6-8 weeks to check your levels.
To support your request for an increase, use the following information:
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors):
"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).*"
*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.
You can obtain a copy of the article by emailing Dionne at
tukadmin@thyroiduk.org
print it and highlight question 6 to show your doctor.
You can also refer to NHS Leeds Teaching Hospitals who say
Thyroxine Replacement Therapy in Primary Hypothyroidism
TSH Level .................. This Indicates
0.2 - 2.0 miu/L .......... Sufficient Replacement
> 2.0 miu/L ............ Likely under Replacement
**
Thyroid Peroxidase antibodies: 44.7 (<34)
Your raised TPO antibodies suggest autoimmune thyroid disease aka Hashimoto's, were you aware of this? Hashi's is where the immune system attacks and gradually destroys the thyroid, this causes fluctuations in symptoms and test results and you can swing from hypo to "hyper" and back again.
Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.
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 (some people prefer to test selenium before supplementing).
Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies.
**
Vitamin B12 Active 95.1 - (37.5-187.5)
Folate Serum 19.4 - (3.8-19.45)
Your B12 and folate are OK. Do you supplement?
Ferritin 31.9 - (13-150)
Ferritin is recommended to be half way through range. Yours is fairly low and low ferritin can suggest iron deficiency anaemia. You could ask your GP for an iron panel and full blood count to see if they indicate this, and maybe discuss your hypoglycaemic crashes. You can see what the NHS says about hypoglycaemia here:
If there is no sign of anaemia then you can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, also liver pate, black pudding, and including lots of iron rich foods in your diet
The Vit D Council recommends a level of 125nmol/L and the Vit D Society recommends a level of 100-150nmol/L. To reach that level from your current level it's suggested to supplement with
5,000iu D3 for 3 months then retest. When you've reached the recommended level then you'll need a maintenance dose to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, 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 an NHS lab which offers this test to the general public:
Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3 as recommended by the Vit D Council
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 such as hardening of the arteries, kidney stones, etc.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking tablets/capsules/softgels, no necessity if using an oral spray.
Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.
Magnesium 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 if taking tablets/capsules, no necessity if using topical forms of magnesium.
Thanks so much for your response. I’ve been on Northstar 100mcg for years and when the GP upped the dosage by 25mcg I was first put on Teva, not good, so changed to Mercury Pharma which was worse! I think your advice of splitting my pills is excellent, thank you! I do supplement with Solgar so that’s good my b12 & ferritin is good. Just ordered D3 and I’ll increase iron intake. Really wanting to try NDT, trying to get an appointment with a functional doctor round the corner from me who supplies Erfa. Wondering if I’ll do better on that. Thanks again for your input, really appreciate it x
Northstar, Almus and Actavis are all one and the same, all are Actavis, Northstar is Actavis rebranded for Lloyds Pharmacy, Almus is Actavis rebranded for Boots. They do a 50mcg tablet so you could halve that to get your 25mcg if cutting a 100mcg tablet doesn't work too well.
Another way is to have all 100mcg dose tablets and cut a 100mcg tablet in half to give 50mcg. Then take 100mcg one day, and the next day a 100mcg plus half a 100mcg so you're alternating 100/150 to average 125mcg.
Thanks, these results are based on 125mcg so I need to increase to 150mcg and retest in 6-8 weeks is that right? Should my vid d level be increased first before upping Levo or can both be done at the same time?
I just checked into my medichecks account and laughed at the Doctors comments on there. You have Graves' Disease but you are in remission and your thyroid is normal ... no I have a multi-nodular goitre and my thyroid is far from normal!
Back to you ... your TSH is too high and you need to up your dose of levothyroxine. You must never stop your levothyroxine because you will become quite ill. Have you tried NDT? I took Thyroid S last year and it suited me. I am now in remission and just take a vitamin D spray and selenium and Zinc Tablets. So my case is different to you because my thyroid is under attack by very high antibodies and does sometimes need no medication.
Unbelievable medicheck notes! Ridiculous isn’t it and a total minefield! I really want to try NDT, local functional doc near me supplies Erfa. Trying to get an appointment. How do you know when to not medicate? Thought I needed to stop for a while but clearly not judging by what you’re all saying so I’ve just taken it!
Did you know prior to this test that your hypothyroidism was caused by autoimmune thyroid disease also called Hashimoto's and diagnosed by high thyroid antibodies?
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone
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
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
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
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
As SeasideSusie says ....your ferritin is likely too low. Iron and ferritin are complex. You can't assume iron is also low, just because ferritin is. Gp should do full iron panel
Vitamin D is far too low.
GP will only prescribe to bring vitamin D up to 50nmol. Aiming to improve by self supplementing to at least 80nmol and around 100nmol may be better .
Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.
Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.
Vitamin D mouth spray by Better You is good as avoids poor gut function.
It's trial and error what dose each person needs. Frequently with Hashimoto's we need higher dose than average
Thanks so much for responding. Yes, I was aware I have Hashi’s, a scan years ago revealed multi nodular goitre. I have been tested negative for coeliac.Totally avoiding gluten would limit my foods even more as already heavily restricted on a low histamine diet, but if necessary I will have to. I have been taking 3 sprays per day for quite some time of Better You, clearly not enough so I’ve ordered 4000iu D3 and maybe I should add a couple sprays per day to that? Thanks for your help x
Personally I needed 6000iu vitamin D to improve levels. Plus magnesium supplements were essential too
As a maintenance dose I still require 3000iu daily, plus as much Sun as I can get
Your thyroid results show you are under medicated and need dose increase in Levothyroxine
Do you always get same brand of Levothyroxine?
Once FT4 is in top third of range, and all vitamin levels optimal....plus likely need to be strictly gluten free....if after all this...if FT3 remains low then you will need to be prescribed small dose of T3 alongside Levothyroxine
Selenium supplements can help improve conversion of FT4 to FT3
Daily vitamin C might be helpful too
Email Dionne at Thyroid Uk for list of recommended thyroid specialist endocrinologists who will prescribe T3
I’ll try that vit d level tomorrow, thank you. I’m trying to get through to GP (in training right now) regrading Levo dose increase and also for a print out of last FBC to see if anaemic due to my low ferritin levels. They did say at the time the usual “bloods normal” but I’ll check myself. If after raising everything and still not great I’d prefer to try NDT and get off the synthetics. I’ve never felt good on it despite previous better results but thank you for the info regarding endo’s that will prescribe T3.
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