Advice for treatment of 15 year old daughter

[marmalade001]

Hello everyone, so glad to have found this group. My daughter has a long history of sub-clinical hypothyroid being flagged up but GPs have never wanted to treat it. She has had UTis since she was a toddler and became very ill in 2019 when she was diagnosed with ME/CFS, POTS and MCAS. Would a knowledgeable person/patient be willing to DM/have a chat with me regarding treatment for our daughter and an overview of thyroid treatment in the UK? I'm feeling overwhelmed and there is a huge amount to learn. It's especially hard to get the right treatment for children, too. We live in London.

[SeasideSusie Remembering]

marmalade001

The first thing to do is obtain copies of her test results. In the UK we are legally entitled to these and as your daughter will be classed as a minor at 15 years old I believe you will be entitled to ask and given a copy.

I don't know if your surgery has online access and if this would be available for your daughter's results, but if not then ask for a print out (don't accept verbal or hand written results as mistakes can be made). Once you have this post the results on the forum and include the reference ranges, the ranges are very important as these vary from lab to lab so we need the ranges that come with the results to be able to interpret them.

Get as many results going back as far as possible if you can but most important will be the latest ones. Ideally we need to see

TSH

FT4

FT3

Thyroid antibodies

Vit D

B12

Folate

Ferritin

It's very possible that all of these wont have been done but if not there is a private lab that will test under 18s so we can give you details of that if necessary.

When doing thyroid tests we always advise:

* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day.

In fact, 9am is the perfect time, see first graph here, it shows TSH is highest around midnight - 4am (when we can't get a blood draw), then lowers, next high is at 9am then lowers before it starts it's climb again about 9pm:

healthunlocked.com/thyroidu...

If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Nothing to eat or drink except water before the test - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Certain foods may lower TSH, caffeine containing drinks affect TSH.

[* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw. If taking NDT or T3 then last dose should be 8-12 hours before blood draw, split dose and adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.]

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 3-7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin). These are patient to patient tips which we don't discuss with phlebotomists or doctors.

Once we've seen the results we can offer further guidance rather than overwhelm you with possibly unnecessary information at this stage.

[marmalade001 in reply to SeasideSusie]

Thanks for that info Susie.

The blood test taken last week was taken at 3:30pm, so not ideal timing in light of that info. The results are:

Thyroid peroxidase AB 9.9

Serum TSH 2.94

Serum free T4 11.3

Serum prolactin 166

Serum folate 6.8

Serum ferritin 40

Serum B12 607

They didn't do Vit D

A potted history is a long history of testing subclinical hypothyroid since she was around four years of age, but GPs did not consider it high enough to treat. Urinary tract infections from the age of 2.5, always very tired, got very ill in 2019. Thyroid in 2019 tested as:

April 2019

Serum free T4 level 12.3,

Serum TSH level 3.84

and in May 2019

Serum free T4 level 10.3

Serum TSH level 2.23

It seems to me that there is a link with the thyroid and her health. In 2019 she was diagnosed with ME/CFS, POTS and MCAS. She became too ill to go to school and has learnt online from home, mostly in bed - too tired and feeling ill to do anything.

Ideally I'd like to find a functional medicine doctor who is also an endocrinologist so that they can treat her holistically. Dr Abbi Lulsegged seems ideal but he can't see her for another 5 months when she's 16. Your advice is really appreciated.

[SeasideSusie Remembering in reply to marmalade001]

Can you add the reference ranges please, as mentioned these vary from lab to lab so we need to see the ranges that came with the results to be able to interpret them.

[marmalade001 in reply to SeasideSusie]

Apologies Susie, here are the reference ranges. Also the test was done at 11 or 11:30am not 3pm.

Thyroid peroxidase AB 9.9 (Ref range 0.00 - 34.00IU/ml)

Serum TSH 2.94 (Ref range 0.51 - 4.30mIU/L)

Serum free T4 11.3 (Ref range 12.60 - 21.00pmol/L)

Serum prolactin 166 (Ref range 102.00 - 496.00mIU/L)

Serum folate 6.8 (Ref range 2.40 - 20.00ug/L)

Serum ferritin 40 (Ref range 13.00 - 150.00ug/L)

Serum B12 607 (Ref range 244.00 - 888.00ng/L)

[SeasideSusie Remembering in reply to marmalade001]

marmalade001

Thyroid peroxidase AB 9.9 (Ref range 0.00 - 34.00IU/ml)

So the TPO antibody result tells us it's negative for autoimmune thyroid disease (Hashimoto's) with this level but because antibodies fluctuate the result could be different another time. Also, it's possible to have negative TPO antibodies but positive Thyroglobulin (Tg) antibodies and these don't tend to be tested at primary level, only secondary level (endo can request) or a private test can include these. Also, just to complicate things, it's possible to have Hashi's with no raised antibodies.

Serum TSH 2.94 (Ref range 0.51 - 4.30mIU/L)

Serum free T4 11.3 (Ref range 12.60 - 21.00pmol/L)

Oh wow! Here we have a big clue. A normal healthy person would generally have TSH no higher than 2 with FT4 around mid-range-ish. Your daughter's FT4 is below range. Is this the first time it's been below range? I am not medically trained nor am I diagnosing but this could possibly be suggestive of Central Hypothyroidism which is where the problem lies with the pituitary or the hypothalamus rather than the thyroid. If you think this might be the case, especially if more than one low/below range FT4, the following information may be useful.

With Central Hypothyroidism the TSH can be low, normal or slightly raised, and the FT4 will be low/below range.

TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone). If there is enough hormone then there's no need for the pituitary to send the message to the thyroid so TSH remains low.

In Primary Hypothyroidism, which is where the thyroid fails, the TSH will be high.

However, with Central Hypothyroidism the signal isn't getting through for whatever reason so the message isn't getting through to the thyroid to produce hormone, hence low FT4. It could be due to a problem with the pituitary (Secondary Hypothyroidism) or the hypothalamus (Tertiary Hypothyroidism).

As Central Hypothyroidism isn't as common as Primary Hypothyroidism it's likely that your GP hasn't come across it before.

Your GP can look at BMJ Best Practice for information - here is something you can read without needing to be subscribed:

bestpractice.bmj.com/topics...

and another article which explains it:

ncbi.nlm.nih.gov/pmc/articl...

and another here:

endocrinologyadvisor.com/ho...

and another one:

academic.oup.com/jcem/artic...

A long read which you might find useful:

thyroidpatients.ca/2020/01/...

You could do some more research, print out anything that may help and show your GP.

You may need to be referred to an endocrinologist. If so then please make absolutely sure that it is a thyroid specialist that you see. Most endos are diabetes specialists and know little about the thyroid gland (they like to think they do and very often end up making us much more unwell that we were before seeing them). You can email ThyroidUK at

[e-mail]

for the list of thyroid friendly endos. Then ask on the forum for feedback on any that you can get to. Then if your GP refers you, make sure it is to one recommended here. It's no guarantee that they will understand Central Hypothyroidism but it's better than seeing a diabetes specialist. You could also ask on the forum if anyone has been successful in getting a diagnosis of Central Hypothyroidism, possibly in your area which you'll have to mention of course.

Serum prolactin 166 (Ref range 102.00 - 496.00mIU/L)

I don't have enough knowledge of this to say anything other than it's in range.

Serum folate 6.8 (Ref range 2.40 - 20.00ug/L)

Folate is recommended to be at least half way through it's range which would be 11.5 plus with that range, so her folate level is on the low side but it's not deficient.

Serum B12 607 (Ref range 244.00 - 888.00ng/L)

This result is OK. According to an extract from the book, "Could it be B12?" by Sally M. Pacholok: According to an 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."

But I assume this is written with adults in mind rather than juveniles.

Serum ferritin 40 (Ref range 13.00 - 150.00ug/L)

This is low and ferritin is generally recommended to be half way through range which would be around 82 with that range. I would suggest a full iron panel to include serum iron, saturation percentage, total iron binding capacity and ferritin is carried out to see if she has iron deficiency. Also a full blood count to see if she has anaemia. Don't supplement without doing these further tests because if her serum iron and saturation are good then supplementing will take them too high.

[marmalade001 in reply to SeasideSusie]

Thanks for that info Susie. I'm going to get copies of all the thyroid tests tomorrow (13 of them and will take a look at the results). I'll ask for a full iron panel to be done, too.

She did have a full blood count. These are the results:

Full blood count - FBC - (SMS) - Normal

Haemoglobin estimation 138 g/L Range 115.00 - 155.00g/L 


Red blood cell (RBC) count 4.12 x10^12/L Range 4.10 - 5.10x10^12/L

Haematocrit 0.42 L/L 0.33 - 0.45L/L Range 0.33 - 0.45L/L

Mean corpuscular volume (MCV) 101.7 fL Range 78.00 - 102.00fL 


Mean corpusc. haemoglobin(MCH) Range 33.5 pg 25.00 - 35.00pg

Mean corpusc. Hb. conc. (MCHC) 329 g/L Range 300.00 - 350.00g/L 


Red blood cell distribut width 12.1 % Range 11.50 - 15.00% 


Platelet count 256 x10^9/L Range 150.00 - 400.00x10^9/L

Mean platelet volume 10.6 fL Range 7.00 - 13.00fL

Total white cell count 5.5 x10^9/L Range 3.00 - 10.00x10^9/L

Neutrophil count 3.2 x10^9/L Range 1.80 - 8.00x10^9/L

Lymphocyte count 1.7 x10^9/L Range 1.20 - 5.20x10^9/L

Monocyte count 0.5 x10^9/L Range 0.10 - 0.80x10^9/L

Eosinophil count 0.1 x10^9/L 0.10 - 0.80x10^9/L Range 0.10 - 0.80x10^9/L

Basophil count 0 x10^9/L Range 0.00 - 0.20x10^9/L

Percentage neutrophils 57.3 %


Percentage lymphocytes 31.3 %


Percentage monocytes 9.2 %


Percentage eosinophils 1.3 %


Percentage basophils 0.9 %

[SeasideSusie Remembering in reply to marmalade001]

Her FBC is all in range so doesn't suggest anaemia, the full iron panel will show if she has iron deficiency. Most GPs only test ferritin so point out that it is low in range so it would be appreciated if a full iron panel could be done to include serum iron, saturation percentage, total iron binding capacity as well as ferritin .

[marmalade001 in reply to SeasideSusie]

Thanks so much - I'll do that

[marmalade001 in reply to SeasideSusie]

Hi Susie,

Finally managed to get test results from the GP. There does seem to be a pattern of high TSH and low T4. Also raised levels in ALT and serum alkaline phosphatase. I'm wondering if there is a pattern showing parathyroid/pituitary problems? I'm going to try and get the iron and liver tested ASAP with the GP. Grateful for any insight.

12 Feb 2013

Serum TSH 6.67mIU/L (0.70-5.97)

Serum free T4 13.7 pmol/L (12.30-22.80)

Serum alkaline phosphatase 313 IU/L (0.00-268.00)

Total 25-hydroxyvitamin level D 50 (12.50-140.00 - 12.5-50 insufficiency, 50-140 adequate)

18 March 2013

Serum TSH 6.92mIU/L (0.70-5.97)

Serum free T4 14.1 pmol/L (12.30-22.80)

5 June 2013

Thyroid peroxidase antibod lev 9.52 IU/ml (0-34)

Serum TSH 4.61mIU/L (0.70-5.97)

Serum free T4 13.2 pmol/L (12.30-22.80)

23 April 2015

Serum alkaline phosphatase 347 IU/L (0.00-300.00)

Serum ALT 109 IU/L (10.00-35.00)

20 May 2015

Serum alkaline phosphatase 371 IU/L (0.00-300.00)

Serum ALT 47 IU/L (10.00-35.00)

20 June 2016

Total thyroxine T4 88 mol/L (59-154)

TSH 6.5 mIU/L (0.27-4.2)

Free thyroxine 12.9 pool/l (12.0-22.0)

Free T3 5.4 pmol/L (4.1- 7.9)

10 Feb 2017

Serum alkaline phosphatase 445 IU/L (0.00-300.00)

Serum ALT 41 IU/L (10.00-35.00)

13 Nov 2017

Serum alkaline phosphatase 508 IU/L (0.00-300.00)

Serum potassium 5.5 (3.50-5.30)

9 April 2018

Serum TSH 8.17mIU/L (0.60-4.84)

Serum free T4 12.6 pmol/L (12.50-21.50)

Serum alkaline phosphatase 609 IU/L (0.00-300.00)

29 May 2018

Se Thyroid peroxidase Ab conc <9 IU/ml (0.00-34.00)

24 October 2018

Serum TSH 6.49mIU/L (0.60-4.84)

Serum free T4 11.5 pmol/L (12.50-21.50L)

Serum Parathyroid hormone tested - noted as normal but no actual results in file

9 March 2019

Serum LDH 242 (135-214)

Serum alkaline phosphatase 305 IU/L (0.00-300.00)

Serum ALT 105 IU/L (10.00-35.00)

Serum LDH 242 (135.00-214.00)

Serum ferritin 194 (13.00-150.00)

Serum potassium 5.4 (3.50-5.30)

Serum creatinine 39 (46.00-70.00)

23 April 2019

Serum TSH 3.84mIU/L (0.60-4.84)

Serum free T4 12.3 pmol/L (12.50-21.50)

Serum alkaline phosphatase 329 IU/L (0.00-300.00)

Serum ALT 111 IU/L (10.00-35.00 )

Serum creatinine 41 mol/L (46.00-70.00)

1 May 2019

Serum TSH 2.23mIU/L (no range given)

Serum free T4 10.3 pmol/L (no range given)

10 October 2019

Serum inorganic phosphate 1.37 mmo/L (1.45-1.78)

30 Nov 2021

Free T4 1.3 (0.7-2.5)

Free T3 3.0 (2.4-4.2)

TSH 3.3 (0.5-3.0 )

TPOab 40 (0-150 IU/mL, 70-150 borderline)

17 May 2022

Serum TSH 5.03mIU/L (0.51-4.30)

Serum free T4 13.4 pmol/L (12.60-21.00)

1 June 2022

Serum parathyroid hormone 1.3 pmol/L Range 1.60-6.90pmol/L

Terrible kidney pain

28 September 2022

Serum TSH 4.44mIU/L (0.51-4.30)

Serum free T4 12.6 pmol/L (12.60-21.00)

Serum albumim 49 (32.00-45.00)

13 March 2023

Se Thyroid peroxidase Ab conc 9.9 IU/ml (0.00-34.00)

Serum TSH 2.94mIU/L (0.51-4.30mIU/L)

Serum free T4 11.3 pmol/L (12.60-21.00pmol/L)

[SeasideSusie Remembering in reply to marmalade001]

marmalade001

With Central Hypothyroidism the TSH can be normal, low or minimally elevated. It is important that thyroid tests are always done under the same conditions to be able to accurately compare them. We always advise testing no later than 9am and having nothing to eat or drink except water befor the test, and no biotin/B Complex for 3-7 days before the test. Would this have been the case for all these tests? If not it could account for the differences in the levels.

Her TSH I would say is more than minimally elevated on many occasions which would cast doubt on a diagnosis of CH, but her September 2022 and March 2023 TSH results would fit the criteria for CH.

Alkaline phosphatase and ALT are constantly raised, and other results out of range I would hope has been addressed by your GP. I don't know enough about those to comment.

As only TPO antibodies have been tested it might be an idea to get a private full thyroid test, and include vitamins, with Blue Horizon, they are the only company who will test anyone below 18 years of age. The best test is their Thyroid Premium Gold test and it will include both types of antibodies and all the key nutrients. Follow the advice about how to do the test given in my first reply above. If a fingerprick test doesn't appeal they have details of how to arrange phlebotomy on their website. See link below for details of discount:

thyroiduk.org/help-and-supp...

Post new results/ranges when you have them for further suggestions.

[marmalade001 in reply to SeasideSusie]

Hi Susie,

Update:

It seems that my daughter has the Deiodinase 2 gene variant in the form of a CT on both genes from myself and my husband.

I've found a paediatrician who is also a functional medicine doctor to help until we can see the endo Dr Abbi Luslsegged when my daughter turns 16 in August. This doctor is ordering the Regenerus Thyroid Complete test and Metabolomix urine test from Genova. Are there any other tests that you recommend getting done at the same time as the Thyroid blood draw next week?

Thanks for all your advice.

[SeasideSusie Remembering in reply to marmalade001]

Looks like you're making some progress 👍

I would make sure that you always have up to date test results when seeing any private doctor - thyroid plus key vitamins - which should avoid any additional costs of the private doctor requiring new tests.

[marmalade001 in reply to SeasideSusie]

Thanks Susie

[Jaydee1507 Administrator]

It is much safer to receive advice on this open forum. Should you then receive questionable or incorrect advice others can then point issues out.