Thyroid UK
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Advice before endo meeting please..(UK)

Hello all,

You have a wealth of knowledge that I am hoping to tap.

Been in conversation with my GP over diet/weight/ still being symptomatic of thyroid (weight gain, excess facial hair, dry skin, brain fog and most worringly-dibilating tiredness) despite being 15 years diagnosed with Hypo-assuming Hashimoto's. My GP put me on a no carb/fasting diet. Lost only 2 kg, now all weight back on after following diet for 6weeks. Supposed to have seen significantly greater weight loss than this.

I have been trying to see an endo for a while, and suggested this after bloods came back with these results: TSH: 0.48 (0.35-5.5) fT3: 3.4 (3.5-6.5) ft4:12pmol (10-19.8) B12: 406 (211-911).

I have fought to see an endo, now have an appt for mid September. Trying to get bloods booked again before endo appt, and was wondering what research would be best to go armed with? I am determined to be heard about trying T3 especially after bloods showed I am down on this, but thoroughly expect to be told to take a hike. I will then explain I will fund it privately but want them to write me a prescription on named basis-how will I do this? Any advice on what course would be best? Research to show?

I am pretty certain I have an absorption issue. Didn't want to start taking supplements of B12 until after next bloods were done. Feeling pretty clueless-just know that I cannot continue like this-the brain fog alone is driving me mad!

Many thanks for any help or suggestions you may be able to provide!

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Saffbaby123,

You possibly do have absorption issues to have such low FT4 and FT3 below range while taking 200mcg Levothyroxine. Your GP or endo could increase Levothyroxine dose to raise FT4 and FT3. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org if you would like a copy of the Pulse article to show your GP or endo.

Have you been tested for coeliac disease, particularly as your sister has it?

For maximum absorption Levothyroxine should be taken with water 1 hour before, or 2 hours after, food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements, magnesium and oestrogen. If you are observing this then malabsorption due to coeliac disease or other causes needs to be investigated.

I'm not aware of any research showing T3 is beneficial if thyroid levels are low due to undermedication or malabsorption. By all means ask your endo whether Liothyronine will be helpful but bear in mind that some CCGs have already blacklisted it and NHS England are trying to prevent NHS from prescribing it.

A named patient basis prescription is a NHS prescription for unlicenced drugs. Doctors aren't obliged to write named patient basis scripts if they are unwilling to take personal responsibility for prescribing unlicensed drugs.

If you are going to fund T3 privately you will need a private prescription. You may need to see a private doctor for a private prescription.

Weight gain and excessive facial hair can be due to PCOS nhs.uk/Conditions/Polycysti... It's not uncommon to have hypothyroidism and PCOS.

B12 406 is unlikely to be deficient but if you have symptoms of deficiency in b12deficiency.info/signs-an... go to healthunlocked.com/pasoc for advice.

Please complete the NHS England Survey re de-prescribing Liothyronine. engage.england.nhs.uk/consu...

Please also sign the petition requesting better thyroid diagnosis, testing and treatment. change.org/p/itt-campaign-g...

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Saffbaby123,

Have ferritin, vitamin D and folate been tested?

Reply

Thank you so much Clutter-

Yes I had these tested, they were: Folate : 6.18ug/l Serum ferritin level 15.1 ug/L [10.0 - 291.0] vitamin D level 45.7 nmol/l.

I am not really too sure what these results mean-but was only told that the T3 were only slightly out of range and the rest were fine.

Funnily enough clutter, I was given the basic coeliac test the TTG IGA antibody test and this was: Tissue transglutaminase IgA level 0.9 u/mL [0 - 6.9] and that was in March 2015. Looks pretty close to the base level, but was told that this was acceptable, only my coeliac sister mentioned that the more rigorous genetic test would perhaps still show up a sensitivity? What do you think?

I will further investigate the links you sent-I really appreciate you taking the time!

Thanks. :-)

Reply

Saffbaby123,

Do you have the range for folate?

Ferritin is low. Ferritin is optimal halfway through range so you may want to supplement iron with 1,000mg vitamin C to aid absorption and minimise constipation. Iron should be taken 4 hours away from Levothyroxine.

VitD 45.7 is insufficient, 100 is optimal. I would supplement 5,000iu D3 for 6 weeks and than reduce to 5,000iu alternate days and retest in April. Take vitD 4 hours away from Levothyroxine.

My understanding is that negative Ttg may rule out gluten intolerance (coeliac disease) but you may still have sensitivity to gluten. You can test this yourself by giving up gluten 100% for a few weeks and note whether there is any improvement in digestion and other symptoms. Then reintroduce gluten and see whether there is disimprovement.

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Thank you Clutter, all great advice-greatly appreciated. The folate range I have here is: Serum folate level 6.18 ug/L [> 5.38]

[(Serum Folate Reference Range = Greater than 5.38 ug/L If the patient

cannot be fasted be aware that a folate rich meal, eaten less than 3

hours prior to venesection, may increase serum folate concentrations.)]

I did not fast for these blood tests, but I did not take my thyroid medication beforehand-took them afterwards.

Just had a brief conversation with my GP, she says that the endo she had a conversation with about my results was going to suggest lowering the dose back down to 175 mcg one day and 200 mcg the next. The whole conversation I had with her about 'optimal' readings and feeling better was seemingly glossed over-I mentioned malabsorption as the readings are a bit odd but she didn't seem to think they were anything to worry about, and apparently neither did the consulting endo! Guess we shall see on the 22nd September!

Many thanks for your thorough analysis Clutter!

:-)

Reply

Saffbaby123,

If dose is reduced to 175/200mcg alternate days FT4 and FT3 will drop.

Folate is low in range. You can raise folate by eating more green leafy veg or supplementing folic acid or methylfolate.

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You're post really stuck out for me as you are describing a lot of the symptoms of Cushing's, have a read up on it before you go to see the Endo. Pituitary problems mess up thyroid results in that the readings are different if you have Cushing's & its' the free T3 & T4 that make sense. Hopefully it's not Cushing's but it's worth acquainting yourself with Cushing disease/syndrome.

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Thank you for this, I hadn't heard of Cushing's syndrome before-interesting reading on the NHS website. Thanks.

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