Exercise wipes me out for several days - fluctu... - Thyroid UK

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Exercise wipes me out for several days - fluctuating results!

SLC76 profile image
27 Replies

Hi, I was diagnosed with hypothyroidism/Hashimoto’s last August. Every time my dose is increased my T4 raises quite high and out of range and my TSH is usually around 0.3. Then my dose gets lowered by 25mcg and I get terrible hypo symptoms and my results rocket back in the other direction. The Doctors say they can’t understand it - helpful! I haven’t felt well for over a year now and it is really getting me down. I used to go to the gym and dance classes every day but if I try to return to my beloved classes, I end up in bed for several days. Does anyone know why this is happening? I have also put on 2 stone in 10months, which is soul destroying. I have a pot of NDT and my functional doctor wants me to change from Levo but as I have been so poorly and can at least work again now (although it is tough) I am scared of negative effects of changing drugs. I’m self-employed and have to keep going, I can’t afford dramatic swings in my health. Maybe NDT is the answer or adding T3 but I’m nervous. Would NDT or T3 help me a) feel better b) get back to exercise c) stop results fluctuating so much and d) help me shift this unwanted weight gain. I am taking lots of vitamins and selenium and magnesium, omega 3,6,9 etc and eating extremely healthy foods - organic veg etc. I would be extremely grateful for any help or advice this wonderful community can give me. Happy Saturday. All best, S :)

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SeasideSusie profile image
SeasideSusieRemembering

You need FT3 testing at the same time as FT4 to know if you need T3 added.

I think the amount of exercise you do could be depleting your T3 so gentle exercise only for now - walking, swimming, yoga.

As you have Hashimoto's, are you strictly gluten free to help reduce the antibodies?

Do you take your supplements at least 2 hours away from thyroid meds?

SLC76 profile image
SLC76 in reply toSeasideSusie

Hi SeasideSusie - thanks so much for your reply. I am strictly gluten and dairy free and I do leave at least 2 hours before taking any supplements. My last results showed that my Free T3 was 4.4pmol/L (Normal range 3.1-6.8) and my Reverse T3 was 18 ng/dL (normal range 10-24) - my endocrinolgist said these results were fine and showed that I am converting enough T3...I'm not convinced though. I have just come back from walking out of yet another class at my gym! So I suppose I will have to accept that I will have to just walk, swim and maybe start yoga. Dancing makes me happy though, so it is frustrating. Do you think my Free T3 and Reverse T3 results look ok?

SeasideSusie profile image
SeasideSusieRemembering in reply toSLC76

Reverse T3 is fine.

When your FT3 was 4.4, what was your FT4 (done at the same time as FT3)?

FT3 of 4.4 with that range is rather low. If your FT4 was quite high in range at the same time then it would seem as though your conversion is poor and you would benefit from the addition of T3 or maybe changing to NDT.

SLC76 profile image
SLC76 in reply toSeasideSusie

It is so kind of you to bother to advise me, Susie - thank you so much. At the time of those tests my Free T4 was 25.1pmol/L (normal range 12-22) and TSH 0.5 - so I had a very high T4 result and they lowered my dose of Levo again. I am currently waiting for latest results but I know, like last time they lowered my dose, my results will have probably swung completely in the other direction again. This is what keeps happening. My T4 goes very high and then they lower my dose by 25mcg and my TSH shoots back up to 11 or 12 while my T4 lowers to around 16 and T3 to 2.9! I feel like I am on a Levo rollercoaster. The Endo says he doesn't understand why my results swing in and out of range. Do you think I should take NDT or add T3. I'm concerned about the change over and how best to approach it. Many thanks.

SeasideSusie profile image
SeasideSusieRemembering in reply toSLC76

SLC76

Free T4 25.1pmol/L (normal range 12-22)

Free T3 4.4 (3.1-6.8)

TSH 0.5

There you have it! Poor conversion. Good conversion takes place when FT4:FT3 ratio is 4:1 or less, yours is 25.1 : 4.4 = 5.7 : 1

My results were very similar, but I don't have Hashi's so I didn't have the fluctuations that it causes, and my then GP didn't keep changing my dose, she actually kept me on the dose that produced the high FT4 in an attempt to help me resolve my symptoms. This was going back many, many years and she didn't know about T3, nor did I at the time. I found out all about this a couple of years ago after lots of private testing and I self source T3 to add to my Levo.

The Endo says he doesn't understand why my results swing in and out of range.

That's most likely because he is a diabetes specialis (most are) and has little understanding of how to treat hypothyroidism and even less of Hashi's.

Do you think I should take NDT or add T3

Well I would in your circumstances (and did). NDT has a fixed amount of T3 - generally 38mcg T4 and 9mcg T3. It suits some people very well, but it's not the right ratio for others. By adding T3 to Levo you have the flexibility to tweak the doses to suit.

Will you get T3 from your endo? Probably not. The current situation is that they are told not to prescribe for new patients, and even some patients already on it and doing well are having it removed.

Are your nutrient levels optimal - namely

Vit D - 100-150nmol/L

Serum B12 - over 500, preferably top of range

Folate - at least half way through range

Ferritin - at least 70, maybe half way through range

SLC76 profile image
SLC76 in reply toSeasideSusie

I can't tell you how helpful this info you are giving me is, I actually feel better just from having a bit of support and advice from you. The functional doctor thought that NDT was better than taking T3 because he said I would get the added benefit of T1, T2 etc. but I have been too scared to change over, since I have had such an horrific year. This weekend I have felt so low with it all, I decided I have to make the decision between swapping to NDT or adding T3. I can get a prescription for T3 from my functional doctor (he did give me the choice originally) and after reading your last reply, I feel confident that that is what I should do, so I will email him and ask him to send me a prescription.

RESULTS:

Vit D is 96 - the range is nmol/L 50-200

Ferritin is 47 - the range is 13-150 ug/L

The above two results were quite recent. The below results were from August 2017:

Serum folate - 18.6 ug/L Normal range 3.9-26.8

Serum vit B12 - 742 ng/L Normal range 197-771 ng/L

Will I need to reduce my Levo dose if I add T3? I am awaiting a full blood count and T4 and TSH results from normal GP but because of the way I am feeling, I am pretty sure the results will show a high TSH again and lower T4. My normal GP won't test for anything else, so I get those done privately. Thank you once again for you kind help and support.

SeasideSusie profile image
SeasideSusieRemembering in reply toSLC76

Yes there is T1, T2, etc in NDT but are they essential? I don't know. Certainly many people do well on T3 so they get along well enough without them.

I did assume that you were in the UK - hence my comments about endos and prescribing T3, but I obviously don't know. If you are in the UK be careful about your prescription and the cost of T3. If you want to know where to source it with a prescription, then it has to specifically state the dose. If you are in the UK then ask in a new thread about this because you can get information which will help you get the correct wording on your prescription. You can, of course, source it without prescription and there are a couple of options there.

You should reduce your Levo when adding T3 with the FT4 result that you have. Taking T3 generally lowers FT4 and we all have a point where we feel best. If my FT4 goes lower than half way through it's range I don't do very well, I need it above half way but not top of range. Other people do fine with a lower FT4. It's very individual and takes a fair bit of tweaking to find the doses which suit us best. I reduced my Levo by 25mcg for a couple of weeks then added 6.25mcg T3, gave it a couple of weeks before adding another 6.25mcg T3. Best to go low and slow when adding T3 as it can be pretty potent, some people feel a difference extremely quickly, I didn't. It's important to keep FT3 in range so maybe go no higher than half to 3/4 of a tablet of T3 before retesting.

As an example, I was on 175mcg Levo with FT4 at 28.59 and FT3 a bit higher than yours. I reduced Levo by 25mcg and added 6.25mcg T3, then increased to 12.5mcg T3. After that I reduced Levo by another 25mcg (now 125mcg) and increased T3 to 18.75mcg. Then I went to 100mcg Levo plus 25mcg T3. I did reduce Levo to 75mcg with 31.25mcg T3 but that gave me such a low FT4 I couldn't function, so I increased the Levo back to 100mcg. Unfortunately I had to change brand of T3 and that messed things up as the new brand was stronger. Lots of tweaking over time and currently I am trying 112.5mcg Levo with 18.75mcg of the new brand of T3. Dose changes seem to take 8 weeks for me to stabilise.

Vit D is OK - do you supplement? I prefer to keep mine close to 150.

Ferritin is too low. It needs to be at least 70 for thyroid hormone to work, half way through range is often suggested and I've seen for females 100-130. If you eat liver regularly, no more than 200g per week, this will help raise ferritin.

Folate and B12 are fine.

SLC76 profile image
SLC76 in reply toSeasideSusie

Have just been researching horrific costs of T3 in the UK! Seems totally unaffordable unless you travel to Europe to source it! Seems very unfair. Sadly I hate liver :( I do supplement with Vit D-3 and B vits. Thanks for all this info Susie, will defo ask about where to source T3 in the UK for reasonable price, it seems so unfair and quite frankly cruel that it has become SO expensive here. I do hope you enjoy the rest of your weekend.

SeasideSusie profile image
SeasideSusieRemembering in reply toSLC76

You will be able to source T3 at a more reasonable cost without having to travel :)

SlowDragon profile image
SlowDragonAdministrator in reply toSLC76

If you get a prescription for T3 you can buy direct from Germany or France online at fraction of UK cost

100 tablets here in UK are just over £900. Hence NHS recent reluctance to prescribe

(Use to be dirt cheap)

In Germany T3 is £30 for 100 tablets, in France £25

Non-prescription option from Turkey or Mexico are even cheaper, but supply can be erratic. Greek supply currently very problematic

With Hashimoto's the flexibility of adding different levels of T3 can be helpful

Like SeasideSusie my T4 was reduced by 25mcg from 125mcg to 100mcg to start T3 (2 x 1/4 tablet for 6 weeks) Then after retesting T3 increased to 4 x 1/4 tablet

I had slight hiccup with change of brand of T3. (I am lucky I get in NHS)

Some brands T3 are stronger than others, so try to stick on same brand.

Almost a year down the line I have found on stronger T3 that 3 x 1/4 tablet T3 is right dose and I have put T4 back to 125mcg.

I also really did not get on with FT4 being below range, when only on 100mcg Levo

Angelic69 profile image
Angelic69 in reply toSLC76

Not sure if this is wise but B complex with B12 helped me with energy to complete classes but did still look wiped out after. Useful info from seaside Susie there about t3 didn't realise that exercise was doing that.

Danielj1 profile image
Danielj1 in reply toAngelic69

Are you taking magnesium oil ?

Magical effect on exercise resilience :)

Backed up by research articles too.

Good luck.

SLC76 profile image
SLC76 in reply toDanielj1

Hi Daniel, I take magnesium twice a day but not the oil. Do you have to stop taking the Magnesium tablets if you take the oil?

Danielj1 profile image
Danielj1 in reply toSLC76

If you had a scale out of 10 for impact

Magnesium oil on its own 8

Magnesium tablet on their own 2

Together 10

So my magnesium oil never leaves my side :)

You try for yourself over a month go with one then the other then both. I have a strong sense you may agree with me.

Danielj1 profile image
Danielj1 in reply toDanielj1

I can’t tolerate more than 250

Orally so one tablet plus 5-6 puffs on spray each day

SLC76 profile image
SLC76 in reply toDanielj1

Thank you, Daniel :)

Danielj1 profile image
Danielj1 in reply toSLC76

If it encourages you at all, just come off the treadmill from 6 miles at a decent lick and just picked up the pace again, again and again and felt a decent dose of adrenaline kick in - feel spot on afterwards too. Before sorting cortisol, adrenaline stuff you have nothing in the tank when you need it for hard aerobic sessions.

Clearing the other issues has taken salted OJ ,tons of black coffee and dried beef liver capsules (as critical as magnesium for endurance ) as iron supplements did nothing for me.

Angelic69 profile image
Angelic69

If your hypo is not under control be careful when taking supplements as when hypo your entire internal system will be slow so could potentially make levels of supplements become toxic and may make you feel unwell. Check with your gp. You mentioned taking lots of vitamins how many mg of each and how often do you take them, How much water do you drink. How often do you empty your bowels.

SLC76 profile image
SLC76 in reply toAngelic69

Hi, I take 200mg Magnesium twice a day, 200ug Selenium, 15mg Vit E, 50mg each of B1, B2,Niacin,B5,B12, Biotin,B12, Inositol (all these are in the nutri-advanced B-Complex tablet). 1000mg Vit C, 200ug of Folate, 28mg iron, 15mg zinc, 2333mg Fish oil concentrate (omega 3), Evening Primrose 1000mg, 50ug Vit K, 8000iu Vit A, 4000iu Vit D-3 and I also take milk thistle drops. My GP is utterly useless and there would be no point checking anything with him. He doesn't even understand the basics of the thyroid! I do have a functional doctor and have seen an endocrinologist as well. The functional doctor is by far the most helpful. Thank you for taking the time to advise me.

phoenix23002 profile image
phoenix23002

I would suspect adrenal exhaustion or adrenal fatigue? It is almost impossible to regulate and/or stabilize thyroid hormone supplementation if some vitamin levels or adrenals are impaired. Only gentle exercise is tolerated by the body when adrenals are in distress. There is a 4 part saliva test for cortisol that can be quite revealing. The bad part of this, if your problem is adrenals, is finding a learned, experienced medical professional to get you thru this and to help heal your adrenals. The link below might prove helpful. It shares some self-tests you can do. If not the adrenals, check your B 12, D 3 and iron levels. They too need to be optimal (not normal... optimal) in order to stabilize thyroid med dosages. As someone else suggested, do get your Free T 3 and maybe Reverse T 3 checked. You may have to go private to get those tests as well as the cortisol tests done.

stopthethyroidmadness.com/a...

SLC76 profile image
SLC76 in reply tophoenix23002

Thank you. I do have adrenal exhaustion. I had my cortisol checked and it is low, not low enough to be considered Addison's disease but the doctor said that you would want people to have a reading of at least 400 in the morning and my cortisol result was just below 200. I am actually taking 2.5mg steroids in the morning and this has helped me get through the day enormously but not enough to exercise too and I don't want to take more steroids in the afternoon. This is not a long term solution but apparently it will just give my adrenals a break. Appreciate you taking the time to advise me.

phoenix23002 profile image
phoenix23002

ahhh... I am in the states and the low cortisol readings (low when they should be high) are addressed by some by applying OTC hydrocortisone cream (1%) as well as some supplements that give the adrenals a break. That is all I know unfortunately. I have never had adrenal problems so I am not well-versed in the condition.

I know you don't want to hear this but it is emphasized over and over. Don't do heavy-duty exercising. It just sets you back. It simply stresses your adrenals. Also try to stay out of emotional, stressful situations. Gentle walks, gentle yoga etc. are appropriate. It is very human to be impatient but it has taken us awhile to get sick and it takes awhile to get back on that road to health. So, be patient with yourself... be kind to yourself. It is going to take whatever time is required.

SLC76 profile image
SLC76 in reply tophoenix23002

Thank you phoenix23002 - appreciate you replying. I hear what you are saying and as a person who is usually always on the go, this past year has been torture LOL! I just want my old life back but will try harder not to push myself. I know you are right but hard to accept! Hope the you are having a nice weekend in the states!

phoenix23002 profile image
phoenix23002

Bless you. I know it is hard when one is used to being on the go and has a high energy level. Hard... hard... hard to settle down. lol.. By the way, my sister has hashis and has had it since the eighties. She told me once that the greatest day in her life was when her thyroid was finally gone and she no longer had to deal with the hashis 'swings' anymore. She could finally stabilize her thyroid med dosage. Funny part is she does fine on synthroid (t4 only) and can't tolerate NDT whereas I do horribly on T 4 only and do wonderfully on NDT. She and I are so close in age and physiology that it is just weird. But proves how very different we all are when it comes to treating our thyroid.

Thanks for your well wishes. We have had a horrible, cold, frigid winter and are finally enjoying some warmer temperatures, thank goodness. I hope you have a good weekend and SLOW DOWN, my friend. :)

phoenix23002 profile image
phoenix23002

Oh... one more thing. Adrenals run on salt. So, some recommend a 'salt cocktail' once, twice per day. You can add 1/4 - 1/2 tsp of organic salt (like Real salt or pink salt) to a glass of water and drink. Some add lemon juice and maybe stevia or honey as a sweetener to mask the salt taste. Do 'google' it... adrenals... salt cocktail. Lots of suggestions for the 'cocktail'. :)

SLC76 profile image
SLC76 in reply tophoenix23002

You are so kind. Thank you :)

silverfox7 profile image
silverfox7

You could help lower the amount of T3 by making sure the vits etc are optimal. I raised mine as I knew I wasn't converting well plus wanted to go back to NDT sovtook 5 months getting conversion right. The amount of time is dependent on how low you are. It worked for me and changing over to NDT wasn't a pronlem-it can be if other things aren't right. Been pretty stable since.

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