Morning lovely people. I really hope you can help we make sense of what's been going on for me for the past 4 years. After getting covid in March 2020 I have not really been 100%. The fatigue etc did improve to about 95% of normal until getting covid again in October 2021 (and going through some extreme stress - child in hospital). I was left with lots of Long Covid symptoms, all of which improved apart from Post Exertional Malaise.
By Feb 2023 I was convinced there was something else going on so got bloods which revealed an underactive thyroid. Started finally on Levo in May 2023 (after many arguments about me only being subclinical). I've worked up to being on 75mcg now. I'll attach screen shots of my spreadsheet tracking all my results.
It also turned out when I got access to my medical records that my thyroid results had be slightly over range for years (since 2016)but never flagged to me.
So after starting on levo, I didn't notice any great improvements but by August last year I was doing okay. Good days and bad but could generally walk a few miles and do all housework etc but still couldn't tolerate any cardiovascular activities, including gardening :(.
In October I got a viral infection which led to Pneumonia and I was very very poorly. I had got somewhat better by Christmas but since 1st Jan things have dramatically gone down hill. I'm signed off work (admin) and spend most day in bed. I keep having relapses when I do too much, but that amount is so small now.
GP is next to useless, won't increase my Levo anymore, chronic fatigue is being banded about. I went to a private menopause clinic and have started on HRT in the last few weeks as my anxiety and depression are horrendous.
I know I need to give things time to work but I'm absolutely desperate and don't know which way to turn. I have a 5 year old who I can't parent and a job I'm going to loose. What should I try/ do next? Private thyroid specialist?
(I know my Ferritin isn't great at last check 64 and I'm supplementing again)
Thanks so much everyone
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Dahliasanddaisies
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I think if I had results like this I'd add a little extra T4 and see if it gets you over the hump if you have enough wiggle room, you seem to convert well... perhaps request a script early due to holiday, lost etc... 🤥😉
Your Vit D didn't look great so if you haven't added some this winter I'd recommend some with K2 3000-4000iu
Thanks Eeyore100, I have considered a steath approach to increasing to 100 but if it then does help and the GP still won't up my prescription I'm back to square 1. I'll ask her again this week, I'm wondering if the HRT will have any affect on my thyroid levels.
Thanks ref the vit D. I am taking 1000 daily but maybe I could increase that
Hi Eeyore, sorry to ask again but I'm on day 5 of being completely bed bound and I'm terrified. What do you think the chances are that just going up to 100 will help? Do you think I should ask to trial some T3 or doesn't it look like I need any? Or should I just try to see a thyroid specialist who might prescribe some NDT? Don't know which way to turn right now
Judging by your previous results you have been a good converter so without a new fT3 result to see if your conversion has been effected I would think a rise in T4 is the better option as swapping to NDT is not a quick fix and expensive!!
You weigh 80kg so I'd expect you to be on a dose between 100 - 125mcg
I'd go to 100mcg and hopefully you'll feel better and be able to deal with your GP's education, retest in 6-8 weeks
It's rarely a smooth ride when altering dose so you can expect to feel a little better and possibly a little worse around week 4-5 seems to be a thing you have to push through 🤗
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
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
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations
Thank you, I didn't know that about folate (not been supplementing at all) will.look at those B vit complexes. I've been using a b12 spray and it has risen but suspect antibiotics have triggered the folate to decrease?
Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.
With your latest results your TSH is still over 1 and FT4 at under 50% showing that you have room for an increase.
Often asking GP for a trial increase seems less intimidating to them as its temporary and can be reversed so you could try that. Certainly you would likely benefit from a little more Levo.
Your conversion is good so more Levo should improve symptoms and raise FT3 also.
Your vitamins are generally good other than ferritin which you are aware of.
Try increasing iron rish foods on your diet and perhaps drinking orange juice with those meals to help it absorb better. Chicken livers a few times a week may be all you need extra.
Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Many members like the ‘Better You’ range of mouth sprays that contain both bit D & K2. Use this calculator to work out how much to take to get your level to 100-150.grassrootshealth.net/projec...
Your folate seems to change quite a bit. What are you taking for that and B12?
Be sure to always test thyroid by the following protocol for highest TSH and stable T4 levels.
Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw, last T3 dose 8-12 hours before blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)?
Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.
I'm not sure what caused the big drop in folate but maybe antibiotics for my pneumonia in November. I'll start supplements for that (not been taking any)
Now I'm taking Iron again but only for a few weeks, so fingers crossed that helps.
I do always get the same brand of Levo as I had an allergic reaction to teva. But as I'm on 75, I have wockhart and Accord. Wonder I'd I should try just one of these and see if that helps?
Negative for TPO antibodies but not had the other test yet. Follow all advice for taking meds x
I just wanted to update this post. The GP refused (in fact 3 staff have said no) to increased dose of 100.
I have just had an appointment with a private Thyroid Clinic and they have suggested an increase to 100 levo, start taking Bio Selenium and a higher dose of Vit D. After 3 months retest and see where I'm at. If no better then to start on some T3. Hopefully the GP will agree to now increase the dose, if not I'll have to pay privately.
I'm feel slightly better than 2 months ago but still can't work or look after my son. I'm exhausted all the time and have no stamina.
I felt better than this a) before I started any Levothyroxene and b) when I was on 50 levo.
I know I need to give it some more time, I'm just worried that I shouldn't have pushed for an increase from 50 (I was living at about 60/70%) normal then.
I'm waiting for my saliva cortisol test to come back as I suspect that my adrenals have a big part to play in this. Since getting Pneumonia in November my body has just not been able to cope. I suspect I just burnt out trying to 'be better' for Christmas and since then it's been a slow recovery.
I'm hoping that improving my thyroid levels, and starting HRT will support then back to functioning properly.
great that you are now on 100 of Levothyroxine 👏. I hope you recover soon but I think with all you have been through it’s not surprising you have Post Viral Fatigue. Be kinder to yourself. Don’t push too hard or you may undo your recovery 🫶
Thanks Sarah Jane, yes I'm trying, I really am! But I've been resting solidly for 3 months and getting more and more depressed. It's awful not being able to be a proper mum or even really leave the house!
pretty much but it’s taken 3 years to find my sweet spot. I will never have the energy I had 5 yrs ago and I still get PEM when I overdo things. Prioritise/plan/pace. Is the best advice I would give anyone going through thyroid problems. Do not expect a quick fix 🤷♀️
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