Hi, I was diagnosed with an under active thyroid at 28 years old. I’ve taken Levothyroxine 75mg for 10 years. For 10 years I’ve just plodded on feeling like death warmed up every day. Thyroxine hasn’t made me feel much different. I feel “wrecked” every day, beyond exhausted.. sometimes feel drunk (despite not drinking) suffer brain fog/confusion, headaches and general malaise. I’ve grown so used to feeling poorly every day that it’s became the norm. I’ve given up with my own gp as nothing changes. Bloods/within range so they assume you’re fine to continue on Levo. Feeling enough is enough.. having never seen an endocrinologist or any sort of specialist, I decided to take it upon myself and pay for private thyroid testing and these are the results on attachment. Does anyone know if there is anything on here that would make me feel the way I do? Or should I be trying to look at other things in order to rationalise why I’ve felt poorly the last decade?.
Until I was 28 and diagnosed I was a fit dancer, healthy happy go lucky type person and then my whole life changed and didn’t return. The last route I’d like to go down with the doctor is “CFS” just because they can’t see anything else. I know there’s something not right. Any advice I’d be very grateful.
Kind Regards People
Clare
Written by
rodney69
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Please go and see another GP and discuss the following:
Ferritin: 13 (13-150)
This is suggestive of iron deficiency anaemia. Ask for a full blood count and iron panel to be carried out. Your ferritin is so low that an iron infusion is needed as that will raise your level within 24-48 hours whereas iron tablets will take many months.
The Vit D Council, the Vit D Society and Grassroots Health all recommend a level of 100-150nmol/L. You will need to buy your own supplement as you wont get anything prescribed for your level, it is classed as "normal".
For your level the Vit D Council recommends:
To achieve 100nmol take 2000 IU D3 daily
To achieve 125nmol take 3700 IU
To achieve 150nmol take 5800 IU
As you have autoimmune thyroid disease, aka Hashimoto's, ** see below ** then an oral spray is recommended for best absorption. BetterYou do a 3000iu spray and if this was my result I would take 6000iu daily for 8 weeks followed by 3000iu daily for 4 weeks then retest.
Once you've reached the recommended level then you'll need a maintenance dose 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 City Assays vitamindtest.org.uk/
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, however BetterYou do a combined D3/K2 spray, so if you use that you won't have to worry about taking it with dietary fat. D3 should be taken four hours away from thyroid meds.
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
Your raised antibodies mean that you are positive for autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results.
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.
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.
Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies, which it obviously has with some of yours. Please check out SlowDragon 's reply near the bottom of this thread for information and links on dealing with gut/absorption problems
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. With Hashi's your levels will fluctuate but you are currently undermedicated, you need an increase in Levo, 25mcg now, retest in 6 weeks to see where your levels lie then.
If necessary, to support your request for an increase, refer to the article in Pulse magazine by Dr Toft, leading endocrinologist and past president of the British Thyroid Association, who stated:
"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 Dionne at
tukadmin@thyroiduk.org
print it and highlight question 6 to show your doctor.
You really need to find another GP because your current one is keeping you ill. It might be an idea to take a partner or someone else who can support you if necessary and explain how you are affected by your symptoms.
Seeing an endocrinologist isn't necessarily the answer, many members here have been very disappointed with their consultations, even with private endos. Most are diabetes specialists and have little to no knowledge of hypothyroidism.
Thank you so much for taking the time to read my results and give me all the information above. I can’t wait to re read it again tomorrow and reply properly. I am going to try and sleep now .. got to be up In 5 hours to drag myself through 12 hours at work tomorrow. I work for an emergency service and have no idea how I’ve not been sacked dozing off and unable to concentrate (brain fog)... it’s just not funny anymore. I’m going to look at all the links you’ve put on here on my lunch break. It’s good to know that people are actually interested and helpful. The last 10 years has been like hitting a brick wall with exhaustion and no real answers. At least these results may help to receive some kind of treatment to feel like a person again.
Clare,this forum gives us the support,understanding and experience of fellow travellers.The admins are amazingly dedicated & knowledgeable.Many of us have found that however much we attempt to get the help we desperately need from the medical profession,it just isn't there.
You have been ill for a while.Be patient with your mind & your body,as you begin the road to recovery.Its tough,trying to find what works for you when the brain isn't up to scratch due to fatigue & brain fog.
This forum continues to be a lifeline for me.As well as being a source of information & support,it keeps me hopeful when things get tough.
Doing such an important,demanding job,you deserve to be well,which you can be,if you follow the recommendations on here.Unfortunately,you won't necessarily convince the doctors that your treatment is woefully inadequate.
Thank you Naomi8 .. I didn’t even expect to get one reply let alone 2 people since I put this on here last night ... I’ve been having a look on all the threads... I can’t believe how many people suffer because of the one size fits all system that our gp’s use. On saying that.. how can they optimally treat people if they are only trained in or knowledgeable in the very basics of thyroid treatment. I guess the hard part is going to be trying to convince a gp that their system just doesn’t work! .. Not looking forward to going to the doctors with my results.. it can only go one of 2 ways. They’ll either say the usual.. “your fine and within range” or they may insist on their usual 3 tier bog standard blood test. A decade of knowing there’s something wrong feeling ill and getting nowhere gives you little faith!
It’s like the last 10 years of life has been a blur .. like am outside my own life looking in. Work has suffered, life has suffered, I haven’t even been able to raise a genuine smile in the whole time. Social life been zero. So tired haven’t been able to form bonds of any descriptions with anyone, relationships doomed before they even start (I just can’t be bothered) zero interest in sex or making plans. Like I have lost the ability to love or feel feelings, the list goes on and on! The mad thing is.. to look at me I look ok but life is pretty blank !
I think I’m on to something good by coming on here. Even if I get nowhere with the doctors it’s good to know that other people are having the same problems. Thanks again very much. It means a lot.
I have resorted,like many on here,to buying my own thyroid replacement medication in addition to the supplements we require,to keep levels optimum(NOT the so called "normal" levels the NHS refer to)
I have been able to keep my GP on board in so far as she agrees to arrange my blood tests & allows me to adjust my dosages.
Many,like me,do better adding in some T3,in the form of natural dessicated thyroid,or by adding some liothyronine to their thyroxine.Can make a huge difference,provided vitamin levels are optimal.
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. £99 - but often on offer for £79
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. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). About 90% of all primary hypothyroidism in Uk is due to Hashimoto's
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels. Low vitamin levels then can 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.
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
Just wanted to say welcome to the forum! Loads of good advice already given. Take it all at your pace though as it's a lot to take in but you will get there! Getting vits etc to the recommended level can take time so be patient. Can't remember whether I spotted the link but this forum is run by Thyroid Uk so well worth looking at their site as well.
I could have written your post, hugs! ( only my fuddled brain not as articulate) i wasnt diagnosed for 16 yrs and offered anti depressents
....falling asleep in car lay-bys my bag in between work calls 🙈. Like all my woomph and happy heart sucked out down a tube!
- I dont do this in laybys now, not amazing but it dOeS get better! and takes small steps and patience ( there is some more in the pot trust me)!!!
Sorry i havent read above if repeating .....
I ended up reading top metabolic books eg dr Peatfield / Lowe
And understanding some simple and fundamental requirements too, not just thyroid and vitamins although so important ( as soon ad i got vit D up i could stop crawling upstairs after a long workday
..Keep asking, Yes gluten free is not the big deal i thought it may be and really helps ( my antibodies went back into range and helped with my weight 👍🏼
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