My wife was diagnosed with Hashimoto’s disease over a year ago after having various symptoms which progressed significantly in mid 2022; with the main ones being:
- Fatigue and low energy
- Very poor sleep
- Brain fog
- Anxiety and panic attacks
- Weight gain - she has gone from size 12 to 18 in two years and has stomach distension
- Dizziness
- Low blood sugar
- Gut issues -Yeast infection and food intolerances
- Generally just feels unwell!
The functional doctor that she originally saw prescribed her 50mg of Levothyroxine for the first 6 months to get her levels back in check, and then increased to 75mg for another 6 months. And because my wife’s TSH, T3 and T4 subsequently landed in either ‘normal’ or ‘optimal’ ranges the doctor felt that was a sufficient dose. Despite the fact that her symptoms never improved!
She has also been taking supplements religiously such as Magnesium, Vitamin B12, B Complex and Vitamin D and has gone gluten free and also moved to a lower carb diet to help manage the issues with her blood sugar.
Her latest results in October were:
TSH -3.1 (Increased from 1.8 in May)
T3 -5.5
T4 -15.5
Again, whilst nothing is out of range, and the fact that her symptoms remain, my understanding, from the reading I’ve done, is that her thyroid is obviously still not functioning as well as it should. Or at least, not optimal for her?
My wife now has a new doctor who increased her Levothyroxine dose in October so it now moves between 75mg/100mg every other day. To date, her symptoms still remain unchanged.
Separately, we decided to test her cortisol levels a few weeks ago and this showed that her cortisol is high. Levels seem to start off in the normal range in the morning and shoot up at lunch and then remain above where they need to be into the evening:
7am - 6.75 ng/ml
9am - 4.83 ng/ml
12pm - 8.93 ng/ml
3pm- 4.61 ng/ml
7pm 4.69 ng/ml
Her progesterone levels are also incredibly low and even though she has been prescribed Utrogestan to help, there seems to be little change.
From what I have read, her low progesterone is likely being caused by the fact that her cortisol levels are high, as cortisol always takes priority, which then depletes progesterone. And I have seen mention that cortisol levels can be high when someone’s Levothyroxine dose is not sufficient as cortisol and the adrenals are trying to compensate for the fact the thyroid is not functioning as it should? This is not something that the doctor has ever pointed out but it’s something my wife plans to raise at her next appointment.
In terms of next steps, as it’s coming onto three months since her last set of results we plan to test her thyroid levels again to hopefully provide more evidence for a further 25mg increase of Levothyroxine. So we can then reach a point where she’s testing every couple of months and hopefully getting closer to being on a more suitable dose and finally ending this horrible cycle of poor professional advice and rabbit holes. As 75/100mg, based on current symptoms, suggests it really isn’t enough?
Full disclosure, I am just a normal bloke who knew absolutely nothing about this complex world of thyroid issues a year or so ago, so I have really been trying to educate myself with a lot of reading to try and help get my wife her life back. I know there are a lot of knowledgeable and more educated people on this forum than myself, so I would welcome any feedback on whether you think we are on the right tracks with our current thinking - that my wife’s above symptoms suggest that she is still not on the right dose of Levothyroxine and that we keep pushing the doctor for further increases until these symptoms finally start to ease?
Thank you in advance,
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Calla_dan
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Calla_dan I assume that the cortisol levels through the day were saliva tests? Can I suggest that when blood is next drawn for thyroid tests, that the blood draw be done at 8-9am and that a cortisol blood test is also done in that time range. It may be worthwhile also getting DHEA-S done as well.
Take a look at the symptoms of Cushing's. Other than bits already mentioned, does your wife exhibit any of those symptoms?
Does your wife take anything that might affect cortisol levels? Steroid-based medications (inhalers, tablets, creams, nasal sprays), HRT, oral contraceptive pill, liquorice, ashwagandha etc. Does your wife have a high stress job?
At what time does your wife take her levothyroxine? There is limited information available about timing of levothyroxine doses, but I would suggest taking it last thing at night (I typically take mine around midnight) rather than on waking in the morning, as there is suggestion that it is better metabolised this way. Although the association with cortisol in humans is still debated (even me saying that will likely cause debate) there is the possibility that the pattern of cortisol levels might shift by changing timing of the levo dose. It's worth a try, but given how little literature there is about this, it's not a certainty.
BTW, can you add reference ranges and units to blood test results please - you missed them off the thyroid levels in your original post.
Calla_dan Just re-read your OP. Note that oral HRT can result in elevated cortisol levels. Transdermal HRT has a lower incidence of elevating cortisol levels (literature suggests that it doesn't, anecdotally some people report that it does). Transdermal is the preferred delivery mechanism in the UK, although oral HRT is still often used in the USA (that is slowly changing). Has your wife discussed transdermal HRT with her doctor?
Hi, not sure how old your wife is but could she be going through perimenopause or be post menopause?Peri/menopause and thyroid issues can start around the same time as majority of women seem to start with thyroid issues then. It can be a very confusing time as symptoms can overlap and you don't know what is causing what.
If both going on simultaneously then it's important not to dismiss peri/menopause but to address both.
She probably could have increased to 100mcg every day
Next test may show she’s ready to do that
Which brand of levothyroxine is she taking for 75mcg and 100mcg
Retest 6-8 weeks after increase
When retest test 24 hours after 75mcg dose
test early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
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 somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
TSH should be under 2 as an absolute maximum when on levothyroxine
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).
Many thanks Slow Dragon for taking the time to respond.
I have provided the ranges above as requested.
I really appreciate the advice. Test kit is arriving next week so we’ll follow the advice you’ve given and Michelle has stopped taking the B Complex in advance.
The brand of Levothyroxine is Accord.
I am hoping the route out this is regular 6/8 week testing and subsequent 25mcg increases as to date testing has been very adhoc and increases have not been few and far between and not based on symptoms.
From your understanding, do you know if there is a link between poor thyroid function and higher levels cortisol? I am hoping that by getting the thyroid levels right, these high cortisol and low progesterone issues will also start to improve.
Presumably you are cutting According tablets in half to get 75mcg
and Michelle has stopped taking the B Complex in advance.
only stop vitamin B complex or any biotin 5-7 days before test
In week before blood test, when stop vitamin B complex, consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
We haven’t tested B Vitamins
Generally never supplement without testing first
But as already taking …..continue as outlined until test
She takes 2000 IU of Vitamin D
Last Vitamin D yes was February 24 and result was 43.5umol/L. Ranges 50-250umol/L
That’s really interesting. So given Michelle’s Ft4 is only 35%. It sounds like a bit of work needs to be done to get to the 60-70% through range. Thank you
It’s very approximate as she now seldom wants to weigh herself given the weight issues she has been experiencing but approx 95kg. For context she was a steady 69kg in 2022.
Goodness. A 137mcg dose really puts into context that she’s still some distance away from where she needs to be. Looking at the positives, it does also give us a lot of hope that by testing and pushing to get closer to the correct dose her symptoms may finally start to ease. Her next set of results will be available w/c 6 Jan so I’ll post then, before she sees the doc. Thank you again.
The October results are listed in the post above but her TSH has continued to increase from from 3.1 to 4.4 despite the increase in dose to 75 mcg/100mcg every other day. FT3 has also dropped slightly. Positive is her FT4 has gone from 35% to 59%. She still feels rubbish and extremely fatigued. She is seeing the doc on Tuesday to request an increase in Levothyroxine. We’d really welcome your thoughts on what increase in dose you think she should be pushing for? Thank you, as always.
Or push for larger increase to 100mcg and 112.5mcg alternate days
But INITIALLY for first 6 weeks suggest only go to 100mcg daily before increasing to alternate days 100mcg and 112.5mcg
Retest in 6-8 weeks after that
Accord don’t make 25mcg
So cut 50mcg into 1/4’s with sharp scalpel
Likely to need further increases over coming months
Vitamin D too low
Is she still only taking 2000iu daily
Suggest she increase to 4000iu or 5000iu daily
B12 far too low
No folate result?
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once her serum B12 is over 500 (or Active B12 level has reached 70), she may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need separate methyl folate couple times a week
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when stop vitamin B complex, she might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70:
Post discussing how biotin can affect test results
Thankyou. I should have mentioned that she only really started taking B12 and B Complex a few weeks before the test. So I am hoping next time she gets tested in late Feb we’ll see an improvement. She is going to increase Vitamin D to at least 4000iu. Thank you for all of your advice, well get another test ordered in 6 weeks and repeating the process until we finnallu get this sorted. Feel more optimistic, I’ll be in touch in late Feb.
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
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
If taking any iron supplements stop 2-4 days before testing
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.
She has also been taking supplements religiously such as Magnesium, Vitamin B12, B Complex and Vitamin D and has gone gluten free and also moved to a lower carb diet to help manage the issues with her blood sugar.
Please add most recent results and ranges aiming for
Test at least annually
How much vitamin D is she taking
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when she stops vitamin B complex, might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if serum B12 below 500 or active B12 below 70 at last test
Full marks to you for educating yourself on behalf of your wife. Many of us find it really hard to talk to family about the mismanagement of hypothyroidism.
Hi, on top of these super-knowledgeable responses above, and if/when you get some brain space to take a look, it might be worth also exploring B12 deficiency/Pernicious anemia etc. I wasn't sure of the B12 test/limits but hypo symptoms also have overlap with B12?
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