Thyroid UK
82,789 members97,812 posts

Just a bit more info for daughter seeing endo in Bristol tomorrow

I posted earlier this week .. My daughter who is 25 has been treated for 3 years with T4 only not doing too well on 100 .her TSH is quite low under 1 but her T4 is about 3 or 4 points over top range with T 3 half range ish . I was speaking to her today and she alarmed me a bit as she said she has been having tight chest , discomfort , she rides a bike to work and feels it after that ... Would a high t4 cause this ? Other than that she still has a lot of hypothyroid symptoms , swelling , low temp lethargy . We were hoping her endo might consider reducing Levo and adding t3 is this a case for it would you think ., or would T3 make it all worse ? thanks Val

19 Replies
oldestnewest

Val-55, I felt very ill with FT4 over range but when FT4 was within range FT3 dropped below. Low TSH, high FT4 and mid range FT3 suggests your daughter is a poor converter and she probably will benefit from T3 added to reduced Levothyroxine. It's certainly worth discussing with her endo to see whether symptoms improve.

____________________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

Reply

Thankyou , yes this seems to be the problem ,she is struggling to keep working , Dr just keep saying all ok no further test needed ..hopefully the endo

might agree to trying t3 and lowering the T4 that seems to be backing up in her system

Reply

Just to let you know Bristol Endo very sympathetic and has prescribed a trial of Armour !! Will have to pay initially but if it is successful he said she could get named prescription on Nhs ...is it easy to change over ? I'm not sure of the dose he has recommended but split into morning and night dose ..fingers crossed !!

Reply

Would love to have the endo name if you could message it to me? I've been seeking an endo who might prescribe Armour in Wales with no luck!

Reply

Yes if you pm me I will tell you ,don't think allowed to post names .regards Val

Reply

Val-55, I'm glad the endo was sympathetic and hope the Armour helps your daughter. Armour isn't licensed for UK use so your daughter's GP isn't obliged to prescribe it and, if willing to do so, may need permission from the CCG to prescribe it on the NHS.

Reply

Thankyou Clutter , yes I was very surprised but it's got to be better than where she is now ,,hopefully it will help , if not then the combination will have to be looked at .He said might have to push to get on NHS so we will see where we are in 3 months ,if it works we will have to pay because the last 3 years have been such a roller coaster for her .thanks again for all your help and knowledge of this complex and frustrating condition .val

Reply

Val, If you have trouble sourcing it try thyroiduk.org.uk/tuk/treatm...

Reply

Val-55

Your daughter's TSH & FT3 is low and FT4 is high.

This along with the symptoms described in your previous posts indicates poor conversion and the addition of T3 to your daughters T4 might help.

A tight chest could easily be a hypothyroid system as it shows itself in all sorts of ways which progressively become worse.

I have recently added T3 to my T4 medication and the benefits are huge.

Raising B12 levels are hugely important as are Vit D, folate and ferritin as deficiencies could impair thyroid hormone synthesis.

If your endo is uncooperative you could email louise.warvill@thyroiduk.org.uk for a list of sympathetic endos/doctors that members have had positive experiences with.

Also there is genetic test proving the likelyhood of a poor conversion rate (link below).

Good luck tomorrow with your daughters appointment.

Flower

DI02 genetic testing

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

This following link explains the importance of vitamins and where they may be obtained. This forum is supported by the charity ThyroidUK. You do not have to join the charity to benefit from this forum but by doing so you will be supporting the charity and also entitled to various discounts when buying supplements, as detailed in the link below.

thyroiduk.org.uk/tuk/treatm...

……………………………………………………………………………………………………………………...................

Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

……………………………………………………………………………………………………………………...................

Reply

Thankyou for you help . I have sent her the link and suggested she print it off and take with her tomorrow ..it's so frustrating ,,Blue Horizon test said her B12 insufficient , Her Dr checked and said fine along with TSH ,they just don't consider the symptoms that are in front of them !,

Reply

Val,

A doctors "normal" nutrient level is not usually the same as what members have found to be most beneficial when considering their thyroid meds.

The TSH range is a whole other story... see links below.

Flower

hypothyroidmom.com/tsh-wars...

thyroid.about.com/od/gettes...

………………………………………………………………………………………………………………

Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

………………………………………………………………………………………………………………

Reply

Did your daughter leave about 24 hours between her last dose of levo and her blood test and have the earliest possible test?

Reply

Yes she takes Levo at night and doesn't take it the day before blood tests . She had bloods taken in morning .

Reply

Another possibility,given that the tightness comes during hard exercise is that T4 can lead to angina type symptoms that a small dose of beta blockers will be helpful in preventing.

Reply

The free T4 should be mid-range, she is too high, and the free T3 should be at the upper-end of that range. She is hyper and hypo at the same time, with those two hormones not optimal. Have you considered a natural desiccated thyroid med? I did synthetics for years, both T4 alone and with T3 with poor results on multiple brands over the years. Have tried multiple brands also of the NDH. Best is what I am currently taking by the makers of Naturthroid from the U.S. (live in California). It is called WPTHYROID and only has two natural fillers! I take it incrementally throughout the day. My endo says three times. 1 grain + 1/2 + 1/2. If dose am with water, and the other two sublingually so I don't have to worry about not eating. Many do okay on the T4 only med for a while, I did for years, and then you can go downhill all of a sudden. That happened to me. Great info on stopthethyroidmadness.com. Good luck! :)

Reply

Ok yes Thankyou , that's how it seems that she is both ...I think the Bristo endo has prescribed armour before .. Perhaps he might suggest it rather than adding T4 possibly .thankyou for that . Val

Reply

I meant to say T3 sorry

Reply

Just to let you know the Endo has prescribed a trial of Armour rather than T3 addition ,fingers crossed .Regards Val

Reply

I am not medically trained either Val-55, but I was born with underactive thyroid. My TSH level is 0.54 but as my thyroid does not work, the T4 thyroxine and the T3 Lithyronine, does the work for me. My ranges are in the middle for me. - Do you know what her results are and what ranges?

If you are in Bristol (I am too) even if your daughter needs T3, it is unlikely to be prescribed at the moment as a new patient- a big No No with the Endo's currently - I had a massive fall out with my so called Endo at the BRI last July. T3 medication is not endorsed because it is deemed unsafe (it is safe, but they use unfounded studies that has no relevance to people with thyroid conditions). The real reason, is the expense of it. (only one company supplying NHS at the moment) however, saying that my results have proven that the T3 helps me, so as I am already on it, they are still prescribing. For how long, time will tell.

How much medication is your daughter on? it might be that she is having too much thyroxine for her and that she seems to be showing signs of being overactive. I am currently on 200 mcg of thyroxine (T4) and 20 mcg of lithyronine (T3).

Might pay to have bloods checked for B12 deficiency, anaemia and vitamin D deficiency too.

I would seek a second opinion.

Hope you can get it resolved and let us know how your daughter gets on

Take care :)

Reply

You may also like...