Further to my last post in January I had my ferritin tested and have been taking iron supp since then.
I do feel I’m getting there because of this but still feel some of my symptoms are thyroid related so requested an increase in Levo.
Today I had a txt from my GP surgery “Your TSH level has fallen below target range. Based on the blood results the correct thyroxine dose for you is 75mcg. Endocrinology have advised a TSH range of 0.5-2.5. I have amended your prescription as such. “
This same doctor upped my dose to 100mcg only eight weeks ago. My blood test was done on 12th May (last Friday). I’ve been on 75mcg since last October and been quite ill at times so requested an increase in dose. Also, all my previous doses have not been based on my weight, when I weighed myself I was under medicated, should be on 100mcg for 67kg weight, I pointed this out to the GP and he upped my dose, no problem. Now he seems to have changed his mind.
Can you advise me before I send him an email. Blood test done 12/5/23 – is my TSH at a danger level?
TSH 0.19mu/L 0.35 – 5.50 (-3.1%)
Free T4 20.4pmol/L 10.5 – 21.0 (70%)
Free T3 5.6pmol/L 3.5 – 6.5 (70%)
Ferritin 31.4ug/L (10.0 – 291.0) I’m taking 20mg Simply Heme by Three Arrows after having a Ferritin Overload test done on your advice on my last post.
Folate 22.54 ug/L >4.12ug/L Don’t know if this is good or bad - (probably deficient 6.13)
Vitamin B12 874 211 – 911 (94.7%) Have stopped taking B12 liquid and now take B complex daily.
Vitamin D 103.7 – on test dated 8/7/22
GP’s notes next to my blood test as follows
TSH – 0.19 Borderline – speak to Dr.
T4 – 20.4 Borderline – other
T3 – 5.6 Normal NFA
I don’t understand why he thinks my T4 is borderline but T3 is normal?
I meant to request an anti body test but forgot (brain fog again).
He has already reduced my dose, I had an email from Lloyds Direct who send me my Levo by post, checking what my dose should be. I’m cross he has done this without consulting me first.
Because I had bad reaction last time I upped my Levo dose I now increase by increments 75/100, then 75/100,100, etc. Because of this I had not been on the full dose of 100 every day until a week before my blood test. I am thinking of suggesting I go onto 75/100 alternate days to see how I get on, do you think this is a good idea.
Thank you for all your help.
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Watamu
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Send GP a polite letter email saying you have no symptoms of over medication
Your Ft4 and Ft3 are not over range
And point out your ferritin is borderline deficient
Include copies of following links
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "
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
If you want a copy of the Pulse article then email tukadmin@thyroidUK.org
and ask for a copy of the Dr Toft article in Pulse magazine.
The link between TSH, FT4 and FT3 in hyperthyroidism is very different from taking thyroid hormone (T4) in therapy. In hyperthyroidism, FT4 and FT3 are usually well above range and TSH is very low or undetectable. In therapy, FT4 can be high-normal or just above normal, TSH can be suppressed but FT3 (the important hormone that controls your health) will usually be in the normal range. FT4 and TSH are of little use in controlling therapy and FT3 is the defining measure. A recent paper has shown this graphically:
Heterogenous Biochemical Expression of Hormone Activity in Subclinical/Overt Hyperthyroidism and Exogenous Thyrotoxicosis
February 2020 Journal of Clinical and Translational Endocrinology 19:100219
DOI: 10.1016/j.jcte.2020.100219
LicenseCC BY-NC-ND 4.0
Rudolf Hoermann, John Edward M Midgley, Rolf Larisch, Johannes W. Dietrich
In a study evaluating tissue function tests before total thyroidectomy and at 1 year postoperatively when using LT4, it was found that peripheral tissue function tests indicated mild hyperthyroidism at TSH <0.03 mU/L and mild hypothyroidism at TSH 0.3 to 5.0 mU/L; the tissues were closest to euthyroidism at TSH 0.03 to 0.3 mU/L [48]. A normal serum TSH level consequently does not necessarily indicate a euthyroid state at the tissue level.
Thank you for all this info. I am just starting to feel an improvement and was gutted when the GP reduced my Levo. I may suggest going 75/100 alternate days to see how things go. Especially after reading Laloot's post on high in range T4. I mis calculated there.
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
Goodness, ferritin over 100, will I ever get there. Two GPs I had tele appointments with didn't think my ferritin was a problem. Even now on this latest blood test all my levels are below my levels on the previous one. My MCH is 27.0 - 0% of a range 27 - 34 I just told the GP that I would be taking iron supplements, she begrudgingly advised that I get tested in three months. Why don't the GP/Endos connect all the dots. We need more functional practitioners in this country. Thank you for all your hel;p.
Sorry, didn't quite answer all your queries. I have started making liver pate, and using minced beef in recipes, altho I don't really enjoy beef. I do eat fish, pulses, beans, eggs, oat milk, veg.
Felt I should have waited longer for the blood test. The surgery sent me a reminder and I felt I should oblige because just before xmas I had to cancel a test due to bad weather, they sent me a txt advising that unless I had a test they would withdraw my medication. This is a new procedure, I had been on levo since May 2020 and never had any reminder to have blood tests before. Then out of the blue a txt almost bullying me into having a test. I suppose I should be grateful, I understand it is difficult to get tests in some parts of the Uk. On the other hand I find it incredible that the local Commissioning Group will not authorise the prescribing of T3, This is Cambridgeshire, with Addenbrookes, one of the most highly regarded hospitals in the country. Thank you for all your help.
Yes I get those bullying texts also. I think you will find they are automated. Thing is if you've just had an increase and it hasn't run it's usual course of time before testing again 6-8 weeks then your GP should be willing to hold of until then.By the way you are not taking anjthing with biotin in it are you. That will mess with your Result massively. A hospital ignored me and ran a thyroid panel even though I told them I'd taken my thyroid meds and was on biotin. Results were massively high. Had to fight for a repeat test.
Don't be phased or bullied stand your ground and ring them speaking calmly but firmly. You can be sure you know more than they tbh...
Also, all my previous doses have not been based on my weight, when I weighed myself I was under medicated, should be on 100mcg for 67kg weight, I pointed this out to the GP and he upped my dose, no problem. Now he seems to have changed his mind.
Dose by weight is only suggested in the guidelines as a starter dose for some people, it's not meant to be set in stone that all hypo patients must have their dose set by their weight. We need what we need, be that more or less what dose by weight would suggest, it really is only a starting point for some people.
Can you advise me before I send him an email. Blood test done 12/5/23 – is my TSH at a danger level?
TSH 0.19mu/L 0.35 – 5.50 (-3.1%)
Free T4 20.4pmol/L 10.5 – 21.0 (70%)
Free T3 5.6pmol/L 3.5 – 6.5 (70%)
Your FT4 and FT3 are well within range. We are only overmedicated if FT3 is over range. Your doctor is making the mistake that most of them make, ie dosing by the TSH result which is wrong. TSH is not a thyroid hormone, the thyroid hormones are FT4 and FT3 and only these can give a measure of our thyroid status.
Check out this post, take any relevant information to your GP in support of not reducing your dose:
Ferritin 31.4ug/L (10.0 – 291.0) I’m taking 20mg Simply Heme by Three Arrows after having a Ferritin Overload test done on your advice on my last post.
With these results of your iron panel previously posted:
Serum Iron 11.4 umol/L (9.0 to 30.4 ) - 11.2% through the range (optimal is 55 to 70% of the range, higher end for men)
Transferrin 2.65 g/L (2.50 to 3.80) - 11.5% through the range (Low in range indicates lack of capacity for additional iron, High in range indicates body's need for supplemental iron)
% Saturation 19 % (16 to 50) - (optimal is 35 to 45%, higher end for men)
Ferritin 23.5 ug/L (10.0 - 291.0) - 4.8% through the range (NICE consider <30 = iron deficiency)
then looking at your serum iron, saturation and ferritin I would have suggested that you speak to your GP about iron supplements, but if you are going to continue doing it yourself then it looks like you could do with taking more but don't forget you'll need to do regular iron panels to check your levels.
Folate 22.54 ug/L >4.12ug/L Don’t know if this is good or bad - (probably deficient 6.13)
That's a good level, when there is no proper range with lower and upper limits we suggest double figures and yours is well into double figures.
Vitamin B12 874 211 – 911 (94.7%) Have stopped taking B12 liquid and now take B complex daily.
Yes, just B Complex now. Remember to leave it off for 3-7 days before any blood tests as it can cause false results.
Vitamin D 103.7 – on test dated 8/7/22
Needs retesting. If GP wont do it then do it yourself:
Thank you, I mis calculated the T4, it is high in range, but I will ask if I can go onto 75/100 alternate days, this may bring the T4 down, and bring the TSH into a more acceptable level for the GP. I certainly cannot stay on 75 alone. I have been on this for over a year with no improvement in my thyroid symptoms. I do take Vit D3 and K2 , not every day tho. Will increase the iron supplements, and investigate magnesium and zinc. I also have a problem with histamine so am going to look at foods to avoid, just bought some books. I hadn't realised just how much histamine can affect the immune system, some of the symptoms are almost the same as thyroid. I cannot take anti histamine tabs. they knock me out completely, not just drowsy. I am not sure if glutton will help me. I don't have any problems with my digestive system, are there other symptoms I should know about regards the glutton.
I don't have any problems with my digestive system, are there other symptoms I should know about regards the glutton.
You don’t need any obvious gut issues to still have significant issues eating gluten
Only change one thing at a time otherwise you can’t tell what helping
Always take levothyroxine on empty stomach and nothing apart from water for at least an hour after. No vitamin supplements or other medications within 2 hours
No vitamin D, iron, magnesium within 4 hours
And be on constant unchanging dose levothyroxine
Before considering trial of gluten free diet
Hashimoto's 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.
A trial of strictly gluten free diet is always worth doing
So that’s no wheat, barley or rye
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to 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 may 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
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
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
Hi Slow Dragon I love your detailed list of sources and info. Really, really useful. Just a little update.... You can get tested for Gluten Intolerance these days but only at specialist NHS Ataxia Centres. There are two. One in London and one in Sheffield. You have to be referred through to them by your GP. Like coeliac test you have to be eating gluten regularly for at least 6 weeks before testing. It's actually a battery of very specific tests they do including genes.Hope you don't mind me commenting but your info is always so accurate. 😊
In my case no the referral was straightforward through GP. Yes to the waiting time.... Think it was 9months to see Proff H at Sheffield. He has been incredibly thorough though and followed me up with brain scans & proper tests. He told me my brain scan showed a typical pattern of brain damage associated with gluten. How scary is that!! It took time to complete all the tests. Obviously in much demand! He also does a presentation on Coeliac Uks website that's worth a nosey.Sadly the more detailed allergy tests are not available to GPs to use. That's a great shame. I can't remember the technical stuff Slow Dragon, sorry but he told me his allergy testing of gluten uses different pointers to the coeliac. He thought that's why mu intolerance wasn't picked up much earlier. Effectively though he felt I'm also likely to be on the coeliac spectrum & he wondered if I might have been developing that eventually... Positive for coeliac gene. What I do know for sure was totally cutting gluten out made a massive difference to me.... & in time better uptake of thyroid hormones so have had to drop my dose twice. Guess that's the guts healing. I will stop rambling!!
Interesting. Am not sure am up for cutting dairy out as well. Having had my estrogen stripped away I need my bones kept in extra good order...so don't dare risk it. I feel well and my digestion is transformed, completely settled so hope I don't need to cut anything else out. Interestingly (or not! ) my sister is lactose intolerant. My Aunt we think was too.... Both my sister & aunt had the same symptoms.
Watamu there is an error in your calculations - ft4 at 20.4pmol/L in a range of 10.5 – 21.0 works out at 93% through range. For me this would be higher than I would like as there are studies that show consistently high in range ft4 can make a person more susceptible to certain cancers when they are on levo only healthunlocked.com/thyroidu...
The GP considers your ft4 borderline because it is towards the top of range. Your ft3 is well within range so does not give the gp cause for concern.
Just read your info, certainly food for thought. Might suggest I go onto 75/100 alternate days, that might bring the T4 down without too much pain. I know that being on 75 for a year did nothing for my symptoms. Thank you for that.
Have now fired off an email to GP. I find I can express myself in a controlled concise way by writing rather than trying to be unemotional on the phone, also brain fog comes into play on the phone. I have stated the facts in a straightforward but not condescending way and asked that we discuss my dose in some other permutation than just 75mcg
This is exactly what happened to me. My GP reduced my dose from 100mg to 25mg. Fortunately, I had some Levothyroxine left so I just continued taking ad I thought it was a mistake while following up with the chemist. To my horror when I called I was told that iss the right dose as my TSH is suppressed. I explained to him that I has seen a private endocrinologist who had advised to take 100mg 4 times weekly and 75mg for the rest of the week. In the end he agreed to change it back and ordered a blood test for 4 weeks time. I have never been on the right dose as I weight 92kg and before going private I was on 125mg . The private endocrinologist added 15mg t3 which seems to help with the symptoms. Good luck
Thank you cbraffe, I will discuss with the GP to resolve the dose. Thank you all of you for your support, I really appreciate it. Today I am feeling stessed and emotional, and not looking forward to confrontation with the GP. Any confrontation makes me more stressed.
Awww it's not easy doing confrontations. But in all honesty you are highly likely to know more than your GP. So being polite calm & matter of fact hopefully will win the day.At the end of the day it's trial and error. He knows 75 left you with symptoms, 100 maybe a tadge too much so somewhere in the middle does make sense. Appeal to his logic.
When I called I wad so low the receptionist told me not to take my frustration on her. When the GP came to the phone I was so hysterical he could barely hear through the tears. I told him my whole journey and due to being neglected I have to pay to see an endocrinologist and yet they make decisions to reverse all in an instant
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GP has reduced my Thyroxine dose.. Please advise…
GP just called and told me to reduce and then stop Levo!
Levo Anxiety and reducing dose
