Possibly overmedicated advice please

Hi everyone, I’m wondering if anyone has any ideas on my daughter’s situation and symptoms!

My adult daughter has had Hashimoto’s for the last thirteen months. Her levo was increased from 100mg to 125mg at the end of April in an attempt to improve her energy levels, and at the end of May she started to have intermittent double vision (and a brief “sticking” eyeball sensation) on looking upwards. She went to the optician, who told her it was a V phenomenon because she was tired. After a while it seemed to go away, but by the beginning of September she was getting double vision looking down instead and painful eye muscles, and it recently got worse.

We experimented with reducing the levo dose intermittently, and it seemed to get better when the dose was lower. We have now reduced to 100mg for 6 days, and the lower eye symptoms went away fairly quickly – though then the upper eye symptoms came back (but are possibly lessening, not confusing at all(!)). However, she is now exhausted. Perhaps we have reduced the dose too much?

She has been supplementing with ferrous fumarate 2-3 tablets per day for the last 4 weeks, and I would hope her ferritin has improved despite a heavy period. Other issues include a high RT3 and a raised salivary cortisol (though the latter was taken on a stressful day). We will shortly repeat the bloods and saliva tests.

I’m not sure what’s going on, and any advice would be welcome! We plan to see our GP and probably an endocrinologist (but will seek advice about the endo in a separate post).

Here is a copy of the last bloods (taken pre-dose):

Ferritin 50 ug/L (13 – 150)

Total Thyroxine (T4) 100 nmol/L (59 – 154)

TSH 0.01 mIU/L (0.27 - 4.2)

Free Thyroxine 19.2 pmol/l (12.0 - 22.0)

Free T3 4.3 pmol/L (3.1 - 6.8)

25 OH Vitamin D 80 nmol/L 50 - 200

Thyroid Peroxidase Antibodies 95.0 IU/mL (0 – 34)

Reverse T3 31 ng/dL (10 – 24)

(B12, Folate and CRP all normal)

PS my daughter has had to re-write this post as I lost it lol!

25 Replies

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  • Her high-ish rT3 is due to too much unconverted T4 in her system, due a poor conversion. It's unlikely that the rT3 itself is causing problems. But, what she could do with is a little T3. It's rather doubtful she'd get that from an endo in the present political climate. Have you considered buying it yourself?

  • Thanks Grey Goose, I tried <site deleted> but they are out of stock I will post for recommeded T3 suppliers. Do you think a private Endo might prescribe T3 or do you think taking NDT would help?

  • NDT might help. Or it might contain too much T4. You won't know unless you try it. I don't know about a private endo. Impossible to tell in advance. Depends on the person him/herself, and their attitude to T3.

  • Wise advice thanks. Much to think about.

  • You're welcome. :)

  • Firstly B12 and folate in range doesn't necessarily mean OK, can you post results

    Yes Ferritin is too low, so is vitamin D

    See SeasideSusie replies on vitamin levels

    As she has Hashimoto's then leaky gut, low stomach acid and food intolerances as result very common. Most common by far is gluten (over 80%) about 5% are coeliac

    Don't need to have any gut symptoms to still have gluten intolerance

    Likely she is poor converter - improving vitamins and gluten free may be enough to improve FT3

    Selenium supplements can also improve conversion

    Avoid all soya including soya lecithin and also all fluoride including in toothpaste

    Fluoride free toothpaste available

    If T3 remains too low then look at adding small amount T3

    Email Louise at Thyroid Uk for list of recommended thyroid specialists

    Louise.roberts@thyroiduk.org.uk

    Might also look at DIO2 gene test

    thyroiduk.org.uk/tuk/testin...

  • Thanks very much for your advice SlowDragon.

    My daughter is also B12 deficient diagnosis Sept 2015 and on weekly b12 self injections and methyl folate 400mcg so B12 is >2000pg/ml [ 197-771] and folate 14.8 range >2.9.

    She has doubled her vit D to 2000iu for past 4 weeks. She takes selenium 100mcg, she was on 200mcg for 6 mnths but stopped after the level was sl raised in June at 1.93 [ 1.00-1.90 other minerals all ok ]and restarted at 100mcg probably 4 weeks ago

    avoiding soya but still using fluoride toothpaste she says will speak to dentist.

    DIO2 gene is normal

    not tried gluten free yet but is aware of advice

    T3 sounds like a good idea, I have tried <site deleted> but they are out of stock. I will post re T3 suppliers

  • Had a quick look at your previous posts and saw she had tried GF for a couple of weeks but felt really bad because of it. I just wanted to add the fact it gave her problems is likely an indicator that this is a problem for her. It is normally only the things we take that are really bad for us that tend to give us problems or withdrawal when we give it up - drugs, alcohol, smoking, sugar etc - we don't expect to have any adverse effects from not eating a carrot for a couple of weeks for example. If you didn't have a problem with something, you shouldn't have a problem not eating it for a couple of weeks. If you google gluten withdrawal, you'll see that many face similar issues at first but this normally only lasts 2-3 weeks maybe 4 max. You must also ensure it is totally removed including cross contamination as if you have a problem with it, tiny molecules of it will start to bother you even more.

    I use to have a lot of problems with my eyes and had sjorgrens (similar symptoms to what you describe) and always had a really dry mouth etc too but this did go after going GF so it could help. I never used to be able to convert at all but can much better now after GF

    Hope she feels better soon :-)

  • Thanks for that Saggy UK, I have shown my daughter your post and she is now seriously re-considering going GF.

  • My first attempt at eating gluten-free gave me dreadful symptoms for the first week or two. I had terrible headaches, and felt as though I had flu.

    I went back to eating gluten as a result (I really didn't know what I was doing, nor was I a member of any support forums at the time.)

    When I stopped gluten a second time I knew what to expect and wasn't so shocked about how bad I felt. I got my first benefits about 5 days after giving up gluten. I've stayed gluten-free this time, and have benefited a lot.

  • Definitely do gluten free First before T3

  • She is already making plans! I'll have to get a cookbook...

  • M&S gluten free is good. Seedy brown bread & also seedy thins make good sandwiches.

    Cheap & easy breakfast Home made museli using certified GF oats in the Free From section. Just add seeds, nuts and chopped fruit of your choice

  • Thanks, I'm making a shopping list, all GF advise welcome! she likes granola I think you can get that GF. Perhaps I could make it also.

  • M&S granola is the best as most of them add way to much sugar or even too much dried fruit (as in a bag of dried fruit but this one's quite nicex

  • Thanks, any advice on pitta breads the sainsburys ones we tried before were tasteless...

  • Not yet found one that's great but only because it's not something me nor my daughter eat or look for. I've sent a long message with suggestions to start off to someone else before as they were really stuck - would you like me to copy and paste in a private message to you? Might find something of use in there? :-)

  • I would love that too please , following can't add much more , lucky my eyes are fine but take levo on its own is usually suggested , nothing for an hour after meds , I too am supplementing , vitamins but need a little T3 I'm in n Ireland si no hope yet of getting any . I'm sure you daughter will improve , a lot if great info on this site ... Good luck

  • Yes, that would be really helpful thank you!

  • Yes I would too, I can convert better now since GF and all the inflammation went down and have in fact added on a little T4 than T3 as used to be T3 only :-)

  • thanks, it's encouraging to hear your positive experiences.

  • CaroS

    Ferritin 50 ug/L (13 – 150)

    For thyroid hormone to work (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range. Your daughter can help raise her level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in her diet apjcn.nhri.org.tw/server/in...

    **

    25 OH Vitamin D 80 nmol/L 50 - 200

    The Vit D Council recommends a level of 100-150nmol/L. Now that it's winter and we can't make Vit D from the sun, supplementing would be a good idea. 2000iu - 3000iu D3 daily may be enough. Retest after 3 months and if she's reached the recommended level look at adjusting the dose to a bit less as a maintenance dose. When supplementing with D3 we are recommended to retest once or twice a year to keep within the recommended range. This can be done with a fingerprick bloodspot test from City Assays vitamindtest.org.uk/

    I like Doctor's Best D3 softgels, but as you are Hashi's SlowDragon recommends a spray such as Better You because it will be absorbed better.

    There are important cofactors needed when taking D3

    vitamindcouncil.org/about-v...

    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 tissues where it can be deposited and cause problems.

    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 helps D3 to work and 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

    naturalnews.com/046401_magn...

    Check out the other cofactors too.

    D3./K2 sprays are available.

    **

    B12 should be at the very top of it's range, even 900-1000. aAn 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."

    Sublingual methylcobalamin lozenges are what's needed if she wishes to self supplement, along with a good quality B Complex to balance all the B vitamins.

    Folate should be at least half way through it's range. If it's low, a good B Complex containing 400mcg methylfolate (eg Thorne Basic B) will help raise the level. High folate level is not a problem as long as B12 is high.

  • Thanks very much Seaside Susie.

    I'm sorry i failed to mention my daughter has been B12 deficient diagnosis 2015 and is on injections level >2000 and methylfolate so both are high. She has been on 1000iu vit D [ throughout the year as pale skinned so has to cover up in strong sun ] but increased to 2000iu in last 4wks.

    Haven't supplemented with magnesium yet due to bowel intolerance of citrate but have got hold of some magnesium glycinate chelate and will try it although her magnesium blood levels were normal in June 0.93 [ 0.6-1.0 ]

  • could you ask the gp if your daughter could be seen by a neurologist or at an eye hospital as it might be good that they exclude optic neuritis.As there seem to be recurring problems and optic neuritis is autoimmune too.best if luck.

  • Thanks, yes seeing GP this week will be asking to have it checked out.

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