Underactive thyroid - next steps

[Mjpp84]

Hi all, I am looking for some further feedback and advice related to an underactive thyroid issue which I have also posted previously on. Blood test results:

7th Jan 2021 - TSH - 2.26 (ref: 0.3-5.5), TPO - 42 (0-33.9), Folate - 6.8 (3.9-20), B12 823 (223-1132), Ferritin - 88 (30-284), Vitamin D - 42 (50-125)

25th June 2021 - TSH - 1.07, FT3 - 4.2 (3.1-7.0), FT4 - 21 (11.5-22.7), TPO <25, Folate - 9.5, B12 - 668, Ferritin - 94, Vitamin D - 88 - ranges as above.

17th August 2021 - TSH - 1.18, FT3 - 4.6, FT4 - 18.8 - > based on 125/150 levothyroxine (c. 5 days/10 days)

No vitamins taken a week before blood tests. Between Jan and c. May I was taking vit D and B complex. Note: I am not currently taking any vitamin supplements.

I am having some more tests done tomorrow (27/08) related to testosterone, full blood count, iron profile, ferritin, prolactin, coeliac screen, calcium, creatine kinase.

Current symptoms: tiredness, brain fog, low mood, fatigue, muscle soreness, aches & pains. I am also struggling with my sleep a lot - not sure if this is caused my my underactive thyroid or due to another issue or condition or the lack of sleep is also causing the above symptoms?

I also tried a low iodine diet (thyroid reset diet) from 20th July for c. 4 wks - eliminating any major sources of iodine. Following a book I had read this claimed excess iodine slowed down thyroid hormone production, and if you clear excess iodine this may reduce the need for medication on the basis the thyroid can't handle too much iodine. Not sure if anyone has benefitted from such a diet - would be very interested to hear thoughts on this.

In summary, I am still suffering from symptoms and cannot see a clear way forward. Following the endocronologist session I had on 18th August - he believes my issues are not related to the thyroid now.

I would really welcome any help, support and guidance on the above, many thanks and stay safe.

[SeasideSusie Remembering]

Mjpp84

Can you add the reference ranges for the results please.

If the tests were done by Thriva please take the reference ranges from the pdf rather than use their "normal" and "optimal" ranges which are pretty much nonsense. You can access the pdf using the link in the help page

intercom.help/thrivahelpcen...

Your results will then look like this:

healthunlocked.com/thyroidu...

Were all your tests done at the same time, no later than 9am, before eating or drinking anything but water, with the last dose of Levo 24 hours before the test?

[Mjpp84 in reply to SeasideSusie]

Hi seaside Susie, reference ranges are indicated in the brackets above after the result. These tests are not done by Thriva but through the GP. All tests done on the morning without food, caffeine and levo taken the morning before. Note - last set of results on 17th Aug was done at 11.20am, previous tests done earlier. Does this answer your question ?

[SeasideSusie Remembering in reply to Mjpp84]

reference ranges are indicated in the brackets above after the result.

So sorry, they didn't register, I have trouble when results are all bunched up in one line like that (it's just a big jumble of text to my eyes), I can distinguish them more easily when they are listed one per line.

[Mjpp84 in reply to SeasideSusie]

No problem. Would be interested to obtain your thoughts and thoughts from others in the community. I feel I have conflicting information and no clear progress and way forward.

[SeasideSusie Remembering in reply to Mjpp84]

Mjpp84

7th Jan 2021 -

TSH - 2.26 (ref: 0.3-5.5),

TPO - 42 (0-33.9),

Folate - 6.8 (3.9-20),

B12 823 (223-1132),

Ferritin - 88 (30-284),

Vitamin D - 42 (50-125)

25th June 2021 -

TSH - 1.07,

FT3 - 4.2 (3.1-7.0),

FT4 - 21 (11.5-22.7),

TPO <25,

Folate - 9.5,

B12 - 668,

Ferritin - 94,

Vitamin D - 88 - ranges as above.

17th August 2021 -

TSH - 1.18,

FT3 - 4.6, (3.1-7.0)

FT4 - 18.8 (11.5-22.7)- > based on 125/150 levothyroxine (c. 5 days/10 days)

See how your ferritin level comes back. For a male I have seen it recommended that 150 is a good level. If there is no sign of iron deficiency or anaemia then you can help raise your ferritin level by eating liver regularly, maximum 200g per week due to it's high Vit A content, also liver pate, black pudding, and including lots of iron rich foods in your diet

bda.uk.com/resource/iron-ri...

everydayhealth.com/pictures...

Vit D is OK although the Vit D Society and Grassroots Health recommend a level of 100-150nmol/L, with a recent blog post on Grassroots Health mentioning a study which recommends over 125nmol/L. You might want to consider going back onto D3 along with it's important cofactors - magnesium and Vit K2-MK7.

Personally I would go back on the B Complex. B12 is recommended to be top of the range and folate at least half way through range. Also B vits support the adrenals. I see you were using Igennus Super B before, it's worth noting that Vit C and B12 should be taken 2 hours apart as Vit C may keep the body from using B12, and Igennus contains Vit C. Maybe look for a different brand, personally I like Thorne Basic B.

Looking at your August thyroid results, did you take all these tests under the same conditions, ie same time, preferably before 9am without eating or drinking anything but water before the test and last dose of Levo 24 hours before the test?

If so, and assuming the ranges for FT4 and FT3 are the same as in June, then FT4 has fallen and is now 65.18% through range compared with 82.82% through range in June. Did you feel better with the higher FT4? I would think an increase in your Levo would be worth trying, 25mcg or if GP is reluctant try and compromise on 12.5mcg.

Your Hashi's will make things more difficult as levels and symptoms do fluctuate with Hashi's.

[Mjpp84 in reply to SeasideSusie]

Thanks for your response SeasideSusie. So basically you would recommend going back on vitamin d and a b complex, do you have any recommendations for vit d (types / brands) like Thorne Basic B ? In terms of symptoms, there has been no major difference when comparing FT4 levels. I could go 150 levo all the time rather than alternating with 125 some days which will also be easier to follow. I will also continue to follow a higher iron rich diet as you have described above. All blood tests were done without vitamins for the prior week, no caffeine or food, just water, the last results in August were done c. 11am, the earlier results in Jan and June c. 8-9am. I am wondering if the symptoms are being caused by something else, it's quite hard to isolate these things I guess - are my adrenal glands not functioning properly or something of that nature ....

[SeasideSusie Remembering in reply to Mjpp84]

Mjpp84

For Vit D I have always done well with Doctor's Best D3 softgels, they raised my severely deficient Vit D level of 15nmol/L quickly and it's what I use for a maintenance dose now. They are quite budget friendly, a good quality, clean supplement with no excipients, just D3 and extra virgin olive oil. As they contain olive oil there is no particular need to take them with dietary fat as the oil contained in the softgel will help the D3 be absorbed. Remember to take D3 4 hours away from thyroid meds.

I usually find pretty good prices on Dolphin Fitness or BigVits.

With your current level of 88nmol/L, I would suggest taking 2,000iu D3 and retest in 3 months.

Once you've reached the recommended level of 100-150nmol/L then a maintenance dose will be needed to keep it there, 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. This can be done with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:

vitamindtest.org.uk/

Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3.

D3 aids absorption of calcium from food and Vit 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, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels, no necessity if using an oral spray.

For Vit K2-MK7 I like Vitabay or Vegavero brands which contain the correct form of K2-MK7 - the "All Trans" form rather than the "Cis" form. The All Trans form is the bioactive form, a bit like methylfolate is the bioactive form of folic acid. These brands aren't available everywhere, Amazon and Ebay do sell them but sometimes they are unavailable whilst waiting for more stock to come from Germany.

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, and large doses of D3 can induce depletion of magnesium. 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 if taking magnesium as tablets/capsules, no necessity if using topical forms of magnesium.

naturalnews.com/046401_magn...

drjockers.com/best-magnesiu...

As Magnesium is calming and best taken in the evening, it may help your sleep.

It might be worth trying 150mcg Levo daily, see where that takes your levels. Your FT3 is at a pretty pitiful 38.46% through it's range and this might be causing your symptoms, it really needs to be over half way through range, even 60% or maybe more.

[Mjpp84 in reply to SeasideSusie]

Thanks for the advice. I will look into the vitamins you have suggested - it feels like there are a lot of tablets to be taken through the course of a day ..? I think the symptoms could be related to the FT3 as you describe - are there ways this can be boosted. I guess you can take T3 but would rather try and boost it with other ways naturally first if you have any advice ?

[SeasideSusie Remembering in reply to Mjpp84]

Mjpp84

Optimal nutrient levels help thyroid hormone to work properly. Optimal ferritin is said to help conversion. Supplementing with selenium is said to help with conversion.

Yes, it's a lot of supplements. We hypos tend to have low nutrient levels and it's a struggle to keep them optimal without some help.

Some brands do a combined D3/K2 but you have to be careful about the amount of K2 they contain, some contain too little and some contain too much. The right amount of K2 is said to be 90-100mcg for up to 10,000iu D3.

[Mjpp84 in reply to SeasideSusie]

Thanks for the advice SeasideSusie. I currently have a small handful of brazil nuts everyday for selenium, ferritin I guess is more in the diet. I guess you feel well yourself and don't have any hypo symptoms ? Are you also taking T3 ? I would be interested to understand how long it took for T3 to work for you if so, and how you went about obtaining this, many thanks

[SeasideSusie Remembering in reply to Mjpp84]

Mjpp84

I guess you feel well yourself and don't have any hypo symptoms ?

I wish! No, at the moment I seem to be on the optimal dose whereby I don't have hypo symptoms, it's just that I have other problems so feeling well isn't a luxury I'll ever have.

Are you also taking T3 ? I would be interested to understand how long it took for T3 to work for you

Yes I take T3 (self sourced). It wasn't a quick fix for me. I started adding T3 in October 2015 and it took 2.5 years of gradually tweaking doses of Levo and T3 before I found the balance of hormone levels that seem right for me. Since then there has been some further fine tuning, a big hiccup when the GP had a total hissy fit last year and blamed old thyroid results for another problem I went to see him about and I wanted to prove him wrong so I reduced my doses and it took 7 months for me to get back to my optimal levels. Some people find their optimal doses a lot more quickly than I did but it's not necessarily a walk in the park and you need patience in bucket loads.

As for Brazil nuts, they need to have been grown in selenium rich soil to contain any selenium. Then it depends in which area the nuts were grown in because the amount of selenium in soil varies. Eastern Amazon and Central Brazil have the highest amounts:

honey-guide.com/2012/11/19/...

The packaging needs to say "Grown in selenium rich soil" and preferably the area and possibly the amount of selenium.

Members have kindly passed on the following information to me:

Apparently Sainsburys SO organic brazil nuts contain 50mcg selenium per 30g serving of nuts

sainsburys.co.uk/gol-ui/pro...

and their Fairtrade ones have 75mcg selenium per 30g serving

sainsburys.co.uk/gol-ui/pro...

One member has said that M&S Natural Brazil Nuts say "harvested by hand in the Amazon forest and naturally high in selenium".

Also, check out Aldi's "The Foodie Market" Brazil nuts, the packaging is said to show selenium content as 79mcg per 30g serving.

Another one is 'My Garden of Eden' Brazil nuts from Home Bargains.. They say "High in Selenium and high in vitamin E" on the front of the packet and the Nutritional Information says "one serving (25g) gives 63ug of Selenium".

[Mjpp84 in reply to SeasideSusie]

Thanks for the additional feedback, there is a lot of different things to consider. It is staggering to me how a relatively common disease seems to be pretty poorly / misunderstood by the medical profession in some cases. When hormones are involved things seem to become complicated and difficult to reach balanced / optimal levels. As a young boy, into my teenage years and early 20's I used to play sport to a v. high level and lead a very active lifestyle and sadly for the moment this definitely isn't the case. It feels like there must be a better way for the thousands of people suffering with thyroid issues.

[SeasideSusie Remembering in reply to Mjpp84]

Mjpp84

It is staggering to me how a relatively common disease seems to be pretty poorly / misunderstood by the medical profession in some cases.

It's puzzling and I struggle to understand it.

I first became symptomatic in 1973, a few months after my second child was born. I was up and down to the doctors regularly and all I got was "You have two young children, you can expect to be tired". That didn't explain the crushing fatigue that meant my husband dragged me out of bed and left me on the floor before he went to work in the morning, why I spent most of my day sleeping on the sofa - goodness knows how my children didn't come to any harm! It didn't explain the weight gain nor the typical puffy face of a hypothyroid person. I have a photo of me back then and it's so glaringly obvious to me that I looked hypothyroid and I can't for the life of me understand why the GP back then couldn't see it.

It took two years of repeated appointments and ultimately my husband coming in with me and saying "Do something with her, I've had enough" for the doctor to even consider doing a thyroid test, and then when it came back he said "Oh, you really are poorly". How I wish I knew then what I knew now! And here we are, almost 50 years later and we are reading here, on a daily basis, exactly the same as what happened to me. It's outrageous.

[Mjpp84 in reply to SeasideSusie]

It would be great to see some more good news/success stories on here of which I am sure there are some both to understand from a learning perspective and also to provide hope, level of optimism and positive outlook.

[SlowDragon Administrator]

How much levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

Approx how much do you weigh in kilo, guidelines on dose by weight is roughly 1.6mcg levothyroxine per kilo of your weight …..but often people find they need higher dose……especially with Hashimoto’s and especially if gluten intolerant or dairy intolerant

As you’re about to have coeliac blood test done, presumably you have yet to try strictly gluten free diet

Gluten free and/or dairy free frequently Helps or is essential for high percentage of Hashimoto’s patients

[Mjpp84 in reply to SlowDragon]

I am currently taking 125/150 levo. I always get the same brand 25 - Mercury, 50/100 - Accord. My body weight is 70kg for a male. I have experimented with going gluten and dairy free with no major impact but may consider trying this for a much longer period i.e. 4 months rather than 1-2 months. Is it worth getting anything else checked with the GP, thinking about other things that may cause my symptoms ? My sleep isn't great by any stretch and I wonder how much this has an impact or causes the muscle aches and pains, fatigue, brain fog etc.

[lesleyoc]

You must bear in mind that as yet doctors do not have all the answers with regard to the thyroid. One doctor finally admitted this to me last week. You need to get the levothyroxine dosage right for you and this can take some time. Certain vitamins are quite crucial with thyroid disease, so personally I would take certain vitamins including Vitamin D, Vitamins B11, selenium, zinc. I also take cod liver oil every day and this seems to hold my arthritis at bay.

If at the end of the day you are not improving with this medication, then you should bear in mind that some patients find that NDT or combination T3/T4 is helpful. The only difficulty with that is that it is virtually impossible to get your GP to prescribe it and the private route is expensive.

My best advice is to be patient, make sure you get tested regularly, keep a health journal and continue to be proactive as appropriate. Don't ever give up. Good luck.

[Mjpp84 in reply to lesleyoc]

Thanks for your advice lesleyloc. I have been taking levothyroxine now for a few years and think that my dosage is at a fairly optimal level also based on my TSH, however, my vitamin levels can certainly be improved which I will work on and I wouldn't be surprised if I am a poor converter given my symptoms and low FT3 readings. It would be good to hear about how people have got on with T3 and if this has been effective, how it has taken to see a difference with symptoms improving. There seems to be quite a bit of resistance to T3 from some people, particularly in the NHS - not sure if this is because it is more expensive to prescribe or if it is a less 'well-known' medication with other side effects / symptoms ?

[lesleyoc]

Hello again,I am on 100mg Levothyroxine and basically it just keeps me ticking over. Since my Hashimoto's diagnosis, apart from feeling so tired quickly, I have been suffering from breathlessness which is quite worrying.

I can tell you that before Levo was around, they used to prescribe NDT but now they stick to the T4 (Levo) because it's much cheaper. Now ordinarly GPs are not really allowed to prescribe T3 or NDT.

It's very worrying because thyroid diseases are becoming more and more common all over the world. I am hoping that because of that fact and also long Covid which often leaves similar symptoms, they will put more money into research.

I have been feeling a lot better the last week or so (although still tired and breathless) and this is mainly due to an emotional change where I have decided not to feel a victim and to take charge of my own health as much as possible. For me this includes spiritual healing which I can access online and mindfulness.

Best wishes for a good recovery,

Lesley