I was diagnosed with an under active thyroid in February after feeling unwell for a long period of time. My TSH was 98 (0.2 - 4.0) and free T4 7.1 (10.0 - 20.0)
I was put on 50 mcg of levothyroxine. I continued to feel very unwell, neck ache, muscle ache, weak arms, headaches, no energy. 4 weeks later the doctor agreed to increase my dose to 100mcg and repeat blood test. My TSH is now 20.9.
I have days that I feel ok (not great!) and days that I can’t get out of bed and have severe headaches as exhaustion. On good days I can do ‘normal’ daily tasks but I have had 5 weeks off work and was hoping to go back very soon. I’m very worried that I won’t be able to manage work and home life as I have 3 young children.
I don’t feel that I am any better yet as I just kept on going and struggling with life & work before I was diagnosed.
Any advice would be greatly appreciated thank you.
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Ahorsman18
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It takes time and patience and retesting every 6 weeks with dose increases until your levels are where they need to be to feel well. It takes 6 weeks to feel the full effects of any dose increase. It can take many months to feel well, and your test results may look good before you feel that well.
The aim of a treated hypo patient generally is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel best.
In order for thyroid hormone to work properly we need optimal vitamins and minerals. If not tested then you need the following
Vit D
B12
Folate
Ferritin
Post the results, with ranges, when you have them and we can tell you if your levels are optimal or whether you need to supplement and we can suggest what to take.
Take your Levo on an empty stomach, one hour before or 2 hours after a meal, with a glass of water only, no tea, coffee, milk, etc as they affect absorption.
Take Levo 2 hours away from any other medication and supplements, some need 4 hours.
When having a thyroid blood test, book the first appointment of the day, fast overnight (water allowed) and leave off Levo for 24 hours (take after the blood draw).
Susie, Fasting does not affect thyroid function tests ncbi.nlm.nih.gov/pmc/articl... . I'm not blaming you as many forum members suggest fasting. Fasting makes no difference whatsoever, so guys please stop starving the patients!
(The recommendation to have an early morning appointment is because TSH is higher then and so it's easier to get a higher dose from a doctor. I would not advise this unless you find your doctor is undermedicating you.)
The mean (standard deviation) and median (interquartile range) TSH during the extended fast on day 1 were 2.26 ± 1.23 and 2.19 (1.21–3.18), which was significantly lower than the fasting TSH performed on day 1 (P < 0.001).
My translation...
The mean and median TSH during the extended fast on day 1 was significantly lower than the fasting TSH on day 1. I think this paper needed better proof readers.
I should have mentioned this paper is very difficult to follow, the terminology is not clear. Given my Hindi is limited to a few swear words I'm not going to criticise this team's English. They carried out blood tests at 8am and 10 am. On the first day the subjects fasted for both the 8am and 10am blood draws, the 8am is referred to as 'fasting' and the 10am as '2 h extended fasting'. On the second day the subjects had breakfast after the 8am blood draw and the 10am blood draw is referred to as '2 h postprandial'.
So the sentence you quote is saying that on day 1 when they fasted for both blood draws the 10am TSH was lower than the 8am TSH. No surprise. They then go on to say the same happened on day 2, the 8am TSH was lower than the 10am TSH.
Later in the text they define Delta 1 as the difference between the 10am and 8am results on day 1 and Delta 2 as the difference on day 2. They then go on to say 'Difference between Delta 1 and Delta 2 was not statistically significant'. i.e. there is no difference between the fasting and postprandial results.
It all could have been expressed in much simpler language but the essential points are :- 1. Fasting makes no difference. 2. TSH is lower at 10am than 8am.
Jim, I am sure that you know that most people to whom we give the advice about early morning appointments for thyroid tests are here because they either can't get a diagnosis or are undermedicated and need an increase in dose. I generally point this out when I give this information; however in this particular case the OP is at the beginning of her thyroid journey with a still very high TSH, so my advice is spot on. And as I'm sure you know, ensuring conditions are the same every time means that you can accurately compare results.
As far as fasting goes, this has been mentioned before on the forum and I am sure that another member linked to an article that shows that fasting does lower TSH and I believe that one member's endo has also told her to do this. It's hardly fasting anyway, evening meal as normal, avoid snacks before bed, delay breakfast until after an early morning test. So I will continue to mention it.
Unfortunately TSH is falling rapidly early in the morning so unless the blood is taken at exactly the same time and our body clocks are spot on the results will vary from day to day. During the middle of the day TSH is more stable.
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 tissue where it can be deposited and cause problems.
Magnesium helps your body use the D3.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds. Magnesium is calming so best taken in the evening, 4 hours away from thyroid meds.
The Vit D Council recommends a level of 100-150nmol/L so once you reach this level you will need to find a maintenance dose by trial and error to keep it there.
You may need testing for Pernicious Anaemia and may need B12 injections.
I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:
"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."
And an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
**
Folate - 5.8 (5.4 - 24.0)
This should be at least half way through it's range and a good B Complex (eg Thorne Basic B) will help if your GP won't prescribe folic acid. However, folic acid/B Complex should not be started until after further B12 investigation and after B12 injections started.
My vit D dose is 40,000 unit once a month for 3 months.
So would you recommend that I ask for another test for B12 and Folate as they are within the low range? I have seen a variety of doctors and none of them have explained any of my results. They just say that my symptoms are normal for hypothyroid and will get better with the medication.
I’m very grateful for the information you’ve posted and your time, thank you.
40,000 iU per month works out at only 1,333 iU per day. It isn't enough. I don't know why doctors insist on prescribing very large doses per week or per month, when they can prescribe smaller doses for daily intake and cause fewer problems with tolerance.
If you want to work out your own recommended dose for vitamin D3, using this link to convert your result in nmol/L into ng/mL :
As Humanbean says, 40,000iu once a month isn't enough. If your level was <30 you would have been eligible for loading doses totalling 300,000iu over a few weeks. You are being given a total of 120,000iu over 3 months. And I believe there is evidence that daily dosing is more effective than weekly or monthly dosing.
With a level of 40 I would be adding to your prescribed amount something like 5000iu daily but when you take the 40,000 don't also take 5000iu for a couple of days either side.
Retest after 3 months, privately if necessary with City Assays fingerprick blood spot test vitamindtest.org.uk
As for B12 check to see if you have any signs or symptoms of B12 deficiency from the link I gave then you can ask on the PA forum (I've corrected the link now) for advice then see your GP. Intrinsic factor antibodies might need testing, you might have PA and you might need B12 injections, some people with your level do. Your level is too low for me to be comfortable saying self supplement.
I’m unsure about Hashimoto and when I asked my doctor he said they wouldn’t treat it any differently. I’ve not had my antibodies checked, should I ask for this at my next blood test ?
Due to the long (7 day) half life of levothyroxine it takes four to six weeks for your body to reach stable hormone levels. Most patients start to notice a difference after a week or two but full recovery will take about six months, although most are much better after three months. This is because thyroid hormone has metabolic and physiologic effects on the body. The body takes a long time to recover from the harm done by hypothyroidism, to restore tissues to normal status. It's not just a question of resuming normal hormone levels, the body takes time to recover.
Your doctor has progressed reasonably well. I would have another blood test four weeks after your latest increase to 100 mcg and if your TSH is above e.g. 5.0 then ask for another increase. (Before anyone jumps on me I'm only suggestiing 5.0 because it is likely TSH will fall further in the next few weeks.). Most patients find they need their TSH down to around 1.0 or 2.0 before they feel better, some need it lower.
When was the blood taken for the TSH 20.9 result? What dose of levothyroxine were you on and for how long?
Thanks jimh111. My last blood test was nearly 2 weeks ago and my increase was 12 days ago. I know it’s early days but feels like I’ve felt unwell for so long! Thanks for your advice and I look forward to feeling better in the near future hopefully!
So your TSH was 20.9 when your were on 50 mcg and they have now upped you to 100 mcg. This is reasonable although you will most probably need another increase to 125 mcg or more. You should have another blood test in about a month's time. Note that TSH is not a good marker for hypothyroidism treatment although doctors are addicted to it. It works for many patients but not all. See how you are in a few weeks time and then let your doctor know how you are progressing. Maybe keep a brief diary on how you are doing and get a little file to put all your results in, you may need this information in the future. Patients like you, diagnosed with a high TSH usually do very well, those with symptoms and a lower TSH are much more difficult to treat.
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Help - Good T4 and TSH levels but still feel awful
Still feeling very unwell
I feel so unwell
Blood test results getting near normal, but have never felt unwell anyway!
