I am a 60 years old and this is my first post. I have suffered with fatigue and many other recognised hypothyroid symptoms for decades. Thyroid tests have always returned borderline despite overwhelming symptoms. In 2009 I was diagnosed with Sjogren's and in August last year I was diagnosed with hypertension. In recent months my hypothyroid symptoms worsened considerably. I enclose test results:
Sept 2018 TSH 5.19 (0.10 - 5.00) T4 11 (12 - 23)
Nov 2018 TSH 4.74 (0.10 - 5.00)
At this stage my GP reluctantly prescribed 25mcg Levothyroxine after I saw an endochronologist.
Jan 2019 TSH 2.14 (0.10 - 5.00)
T4 12 (12 - 23)
TPO 168 (0 - 75)
There was a noticeable difference in some of my symptoms after starting Levothyroxine and TSH levels improved. However, T4 showed little improvement and the endo seemed unconcerned, stating it was now in range. He recommended my TSH be repeated every 2-3 months and kept in the lower half of the range. There was no mention of T3 or T4 monitoring. His report was rather superficial instead of the in-depth investigations I expected. I felt he was making every effort to keep in line with procedures implemented thus far by my GP. I have yet to be told whether my results signify Hashimotos/subclinical hypothyroidism/primary hypothyroidism.
My GP has kept me on 25mcg Levothyroxine since November and has now told me to wait until my TSH (and T4???) is tested again in April before she will even consider increasing my dose. When I said I was concerned about my TPO antibody results, she said she'd seen many antibody results much higher than mine and seemed complacent.
I would like my dose to provide OPTIMUM health in order to gain the quality of life I've been missing for decades. I'm constantly tired and my weight has crept up to 82kg. I would love to have the energy to enjoy every day instead of needing rest days in between active days. I feel as though I've wasted much of my life resting or sleeping. I will be taking this forum's advice regarding fasting before blood tests and taking that day's Levothyroxine AFTER the tests. In the past, I have not done this because I was told I don't need to fast for thyroid tests.
I'm finding this whole process of thyroid treatment emotionally draining. Repeated GPs over the years have blamed my symptoms on my stressful job (in my thirties), depression, middle age, menopause, and now, my advancing age. It's disheartening to witness their disregard to my concerns and their defensive attitude towards me. I feel I'm having to beg for the necessary dose I require.
I would be extremely grateful for any advice regarding my personal Levothyroxine dosage in order to gain optimum improvements. I hope the test results I've posted will help people share their opinion with me. Please share your thoughts so that I know whether my concerns are groundless or not. If there are any doctors or endochronologists on the forum willing to give their opinion, my GP may take me seriously if I show her their qualified responses. Any thoughts would be very wecome; please help.
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setapart
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Clearly you are under medicated. Your January results show you are under medicated. FT4 is right at bottom of the range. It should be in top third of range
TSH is too high
25mcg is only half the standard starter dose of Levothyroxine
For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.
* This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.
Your high TPO antibodies confirm you have autoimmune thyroid disease also called Hashimoto's
About 90% of all primary hypothyroidism in Uk is due to Hashimoto's
Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise
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.
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
Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
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
Ask GP to test vitamin levels, or like thousands on here, test privately
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to 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)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Suggest you email Dionne at Thyroid Uk for list of recommended thyroid specialists.
Come back with new post once you get results and ranges
Thank you for your informative response! Folate, ferritin and B12 were normal but vitamint D was not tested. I am considering taking private tests as T3 and TG thyroid antibodies were not tested. I have tested negative for coeliac disease in past years. I am slowly introducing a gluten-free diet as so many members seem to think this will help, thank you.
There is normal and there is optimal. Your endo declared your medication was fine because your FT4 result was literally as low in the range as it is possible to get without falling below range. So please get a print out of your vitamin and mineral tests and post them for help. Chances are high that they are not fine at all, just scraping the barrel.
Thank you for responding. I have been tested on the following:
ferritin 71ng/mL (10 - 120.00ng/mL
folate 13.9ng/mL (3.00 - 12.00ng/mL) I take supplements
B12 492pg/mL (200.00 - 900.00pg/mL)
The printout describes all the results as normal/no action. I take a variety of suppplements so I assume my problems all relate to my thyroid function.
Thank you very much for your prompt response. Ferritin, folate and B12 were in the normal range but VitD3 was not tested. However, I have been taking multivitamins for years, including vitamins B, C and D and eat vitamin-rich foods. However, from your response, I need to increase my vitamin C intake.
So many reasons why you should not be taking a multi-vit!
* If your multi contains iron, it will block the absorption of all the vitamins - you won't absorb a single one! Iron should be taken at least two hours away from any other supplement except vit C, which is necessary to aid absorption of iron, and protect the stomach.
* If your multi also contains calcium, the iron and calcium will bind together and you won't be able to absorb either of them.
* Multi's often contain things you shouldn't take or don't need : calcium, iodine, copper. These things should be tested before supplementing.
* Multi's often contain the cheapest, least absorbable form of the supplement : magnesium oxide, instead of magnesium citrate or one of the other good forms; cyanocobalamin instead of methylcobalamin; folic acid instead of methylfolate; etc. etc. etc.
* Multi's do not contain enough of anything to help a true deficiency, even if you could absorb them.
With a multivitamin, you are just throwing your money down the drain, at best, and doing actual harm at worst. Far better to get tested for vit D, vit B12, folate and ferritin, and build up your supplementation program based on the results.
Sorry, they really ARE supplements, not multivitamins - my mistake. I have now posted my exact results for ferritin, folate and vitamin B12, including ranges. I very much appreciate everyone's efforts to help.
But, multivitamins are supplements. A supplement is anything you take that isn't a drug.
Just looked at your results, and your ferritin is still on the low side - have you had your iron tested? And, personally, I would want my B12 higher than that.
Are you on medication for the blood pressure ? I have read some meds can have a negative effect on T4 to T3 conversion. I understand magnesium is good for blood pressure - research the type carefully as there are different ones and there is one suitable for hearts/circulation. Many of us take Mag with VitD to aid its uptake ...
Which supplements are you taking and how much ? It seems your GP has not even read the Guidelines pointed out above 😊
Selenium is suggested here often too. Hope you soon feel stronger.
You say you already supplement... Do these include methylated b vitamins especially bias towards B5 and P5P for adrenal health, Magnesium as Citrate, Taurate, Biglycinate or Malate, Zinc, Selenium and Omega Oils (sea buckthorn for sjogrens), Vitamin D3, Co Enzyme Q10, Vitamin C and Mineral Salts? Also look into Collagen support and amino acids for Sjogrens (vitamin c is vital for collagen and for adrenal health).
If she is seeing antibodies and ignoring them then she is incompetent! Your antibodies are likely destroying your thyroid whilst she chooses to ignore.Hence you feeling worse.
Can you get your T3 tested privately to check that out. If low might help your case, if you see Endo? If you don't feel the Endo is doing enough, I would insist on being sent to another Endo - one who will look at things in more depth. Research a good Endo. And good luck.
Hi setapart (any special reason for calling yourself that? - Just wondering, you don't have to answer!)
"TSH 4.74 (0.10 - 5.00)"
My TSH never tested above 6, but I still didn't feel well when it got to just below 3. "Within range" often doesn't mean a thing. The ranges were apparently based on people who are well. With thyroid problems we need to be "Optimal", not just within range, as I think someone else said already.
Thank you for your kind response. The reason I called myself 'setapart' is because as a Christian, I know I've been chosen and set apart to bring glory to God's name. I was chosen for this purpose. I praise Him because despite many illnesses, diseases and operations, He has protected and preserved me. I have not mentioned all my medical past in my posts because I didn't think them all relevent. I am a child of God and I have worth. The 'professionals' that treat (???) me do not have God's love in their hearts and are cold and heartless but my God upholds me. I am loved, cherished and chosen by God. He will give me the strength to deal with life's disappointments so others can know of His love and glory.
You asked me the reason for my chosen name and I wanted to be honest. If you're not a Christian, I hope I haven't offended you. I feel God put you and all the other compassionate people on this forum in my path for a reason. The support I have already received has given me strength and encouragement when I needed it. Your kindness is much appreciated.
Wow! You warm my heart......... another Christian, amazing. Thank you, Lord. Thank you for the verses, Jnetti. They were on the same subject being discussed at my prayer meeting a few hours ago! God is reminding us of His promises. You've made me sparkle. If you live anywhere near Telford or Shrewsbury we MUST get together!!!
Hi setapart, i am so sorry to read of your ongoing suffering, i personally am in the same boat as yourself , but unfortunately am not in a position to offer too much advice as have only been on this forum for a short while myself and am still learning day by day . One thing I will say , the people on here have been so helpful to me and they are helping me keep my chin up , i will be doing( as advised on here ) my own blood tests , as the NHS and even private specialists have let me down no end . I hope you find a way to get better soon with help from the people on here .Take care 😊
Sorry I haven't replied earlier. The only solution I have found is NDT. Natural Desiccated Thyroid really works because it works and is balanced and natural. You have to experiment with the dosage. However, it is the only real solution in my experience, after trying everything on the planet.
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