12 months of results still not confirmed on record and still not offered medication by NHS

20 year old female dance student

Growing up health okay until approx. age15 ......

Nut allergy

Penicillin allergy

Raynaurds syndrome

Food intolerances

IBS

Tiredness

hayfever

hip impingement

Over time the weight crept on even though taking regular exercise

Approx 4 years ago started to suspect Thyroid issues but bloods 'normal'

Sept 2014 left home to study dance FULL time min 5 long days PW sometimes 6 or 7

Health took a nose dive big time

Struggled with tonsillitis, had course of antibiotics, had bad allergic reaction, had new prescription but health never picked up fully Sept 14 to to April 15 felt very low.

Tiredness

Constipation

Monthly periods lasting on 1 day each cycle

Hair loss, hair dry, hair thinning

Bloating, water retention, puffy

Feeling cold

Bad reactions to foods/food intolerances

IBS

breathlessness

FEB 2015 Paid for private specialist who diagnosed IBS but noticed the following

TSH 7.69 and T4 13.23

he wrote to her Dr suggesting trial of thyroid meds as symptoms had been prolonged OR testing again after 6 weeks!!!

No prescription so changed Dr

tested again 12th May 2015

TSH 4.08 (sent away told normal)

Thyroid Peroxidase antibody level 5 iu/mL <50

Glucose 4.5 mmol/L

serum calcium 2.1 mmol/L

Serum bilirubin 9 umol/L

Paid Private June 2015 results Genova

CORTISOL Levels

1 29.52

2 14.07 (raised out of range)

3 8.28 (raised out of range)

4 1.93

Sum of Cortisol

53.8

DHEA

Sample 1 1.53

Sample 2 0.37

DHEA Mean 0.95

DHEA: Cortisol Ratio 0.052

T3 Urine

1,640 (middle of ref range)

At this stage trailed

Nutri Adrenal Extra & Nutri Thyroid and Selenium

along with cod liver oil & ZMA

Sadly the private after care was non existent and she'd been having heart palpitation with no other signs of improvement in health so I stopped her taking them as felt she needed better support/supervision.

She was so desperate to loose weight to look good on stage that she wasn't listening to her body on the supps!

Acupuncture helped

Chinese herbs helped

August 2015

she went GF & diary free and looked at FODMAPS

cut LOADS out!

She did candida die off as a precaution which wasn't easy as her tongue looked so unhealthy

she had bone broth daily and ate clean foods only. organic when possible.

Sept 15 returned back to year 2 full time dance degree a new person

Hip impingement issue gone

December 15 did splits for 1st time

flexibility improved, sticking to same foods so not bad reactions when eating, feeling more confident but still not completely healthy.

Toilet once a day but not disposing of enough

Hair growing but still dry and thin on ends, still cold, neck swollen, still unable to loose weight but not gaining it but appears to be carrying more body fat and water retention than ever! very upsetting when you're working so hard and eating right but failing to get the results you deserve.

I wrote to her Dr in September complaining that they need to listen to her and take notice and the fact her health had improved was down to our persistence and hard work in researching and making lots of changes

10th September 2016 test results

TSH

Ferritin 121 ug/L

Haemoglobin estimation 135g/L

Total white cell 9.00 10*9/L (my own research suggested infection or inflammation

Platelet count 232

red blood cell count 4.74

mean corpusc haemoglobin 28.5 pg

Once again sent away by her Dr!!! even though she now has 8 months worth of test results and still not feeling 100% right

We went to nutrition therapist next!

More tests 29th September 2015

TSH 2.23

T4 85 (lower end of 'normal range')

FT4 12.2 (just below 'normal range'

FT3 5.8

FT4: FT3 Ration 2.1 (below 'normal range')

Reverse T3 0.30

TG <20

TPO <10

VIT D 90 (but she does take daily quality supplement)

She also had stool samples analysed

Basically she had too many yeast growth in gut...commensual flora x 3 species

low on beneficial bacteria

secretary IGA raised (sign of body's immune system fighting infection/food intolerance)

Took multri strain probiotics etc more supplements bla bla

sent her back to Dr January 2016 as still wanted NHS to take notice of her and take her symptoms seriously

THYROID ULTRASOUND SCAN found LOTS of nodules on thyroid but not enlarged appeared normal in size apparently.

I'll add photos for the last bloods results

which included thyroid, hormones, diabetes, liver etc.... TSH 4.34 Free T4 12.9 ferritin 79

Finally referral to ENDO!!!

So here we are....next local endo appt for her is June (she will have left the area by then) so we've now decided to pay private AGAIN! but now we want the best endo people can recommend??? (feel free to PM me) one who will prescribe Armour or similar and one who will adjust dose accordingly and work hard to help dig that bit deeper to her root cause which I feel all started in her gut age 15! food intolerances have been a pain in the ....(what rhymes with gut).

ps. I have already purchased Armour from online pharmacy in America but have been patiently sitting tight waiting/hoping for the NHS to diagnose her so at least someone will monitor her as I live so far away and she's she's not so good as self assessing #brainfog

THANK YOU SO MUCH to whoever takes the time to read my LOOOOONG post.

Much love to you all xxx

25 Replies

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  • no way whatever are any of her TSH results "normal "

    Her free T4 is at lower end of normal or below

    She is hypothyroid both onb symptoms and blood tests but lousy NHS will try to ignore her

    Best bet is to self treat with NDT and regain her health

  • I do have NDT but after the scare with the nutri supps and the palpitations I was kind hoping a prescription of Lovo off Dr would at least have it on record that she needs monitoring and we were going to follow online instructions on how to up dosage over time.

    I just want it on her medical records confirmed that she has a problem as she's 21 this year and may even end up working abroad in the future....

    I do believe that GF & DF & low sugar has helped her beat the fatigue and severe constipation she suffered last winter x

  • IMHO she is better off starting on 1/4 tablet NDT than levo

    but ferritin

    folate

    b12

    vit d3

    do all need to be checked

    if theres an adrenal problem might be best to simply take at least 2000mg good Vit C

  • Before I was diagnosed as hypo I had lots of palpitations - my heart was struggling due to such a high TSH. After I was given levo, my palpitations were worse. Sometimes I think it is because it is synthetic and may not suit some people.

    NDT contains all of the hormones our own healthy thyroid gland would produce and has calcitonin as well which levo doesn't have. Even though it's a small amount calciton helps against osteoporosis.

    Before you begin take pulse/temp several times a day so you have a guideline. and also take a Basal Temp Test. You can stop when the dose is right and symptoms go.

    healthunlocked.com/thyroidu...

    There's no reason to be nervous if you start with a low dose of NDT, 25mcg (1/4 of a grain) and increase by 1/4 every two weeks. Taking note of pulse and temp regularly. Any signs of overdose, i.e. too hot, fast pulse, just miss a day's dose and go back to the previous dose the following day.

    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.

  • Yeah she's been wearing fitbit HR charge 24/7 but it affected her wrist so took break from it until healed.

    her Heart rate was 47 bpm while sleeping. (Low)

    she has a digital thermometer but the mercury one she bought we cant read it.

  • A digital one will be o.k. as the reading will be consistent and I know mercury ones have been banned.

    Heart is low and I assume her temp is low as well. Sometimes, even when on an optimum, it might not completely return to normal but we do feel much better.

  • I'm sorry you are having such a struggle but your story is so familiar. They don't know clinical symptoms nor take notice of them. The fact that your TSH was 7+ was sufficient. Female problems as well as fertility is affected to. Some have too much monthly problem and others too little.

    Thyroid hormones are needed in our receptor cells so that every single thing works properly., i.e. pulse, temp, too. We usually have a low pulse and temp.

    Email louise.warvill@thyroiduk.org.uk who has a list of sympathetic doctors. Others will send you a private message if they have info.

    Always get the earliest blood test for thyroid hormones and fast (you can drink water). If on hormones leave about 24 hours between your last dose and test.

  • Weight gain is a big problem and it is a clinical symptom of hypothyroidism as everything in our body slows down (hypo means low) so unexplained weight gain is one of the 300+ clinical symptoms. Dieting is not much good as metabolism cannot be raised until on optimum hormones and weight can reduce without diet.

    web.archive.org/web/2010103...

    There are other topics at the top of the page which may be of interest but some links within the topics may not work as the site is now archived.

  • Was the 12th May 2015 serum calcium under-range? Parathyroid hormone test or treatment?

  • Serum calcium was recorded at 2.22 then directly below it said Corrected serum calcium level 2.1 mmol/L (2.10 - 2.55) normal apparently

    so I was annoyed this wasn't highlighted by Dr.

    She has received zero treatment from NHS.

    Luckily she's a fighter and struggles on but trying to improve her dance skills is a struggle. She doesn't progress as much as she would have hoped to but she's getting by and will get her degree.

  • I've known mine to be under for a year now, 2.13 (2.2 ~ 2.6) corrected. Was supposed to have PTH test last week, but I don't see it in the list of results. I get slight feelings of glass splinters in my hands and cramps in hands and feet.

    Remind them/her to re-test every six months.

  • What is PTH test?

    She would have cramps a year ago when she was at her worst.

    hope you get 'better' soon

  • Thanks, PTH = parathyroid hormone. They should also test vit D, potassium and magnesium.

    Usually with low calcium there's high potassium, but it can be low/normal with Conn's syndrome (a cause of high blood pressure, so check that).

    If it's parathyroid, the bone broth and vit D are good and some would caution to keep the level in the 50 ~ 100 range, with sunshine and food sources being better than a supplement. Canned salmon, sardines or pilchards eaten with the bones would kill two birds with one stone. Sainsburys have sardines with no salt at a very reasonable 40p per tin.

    Were her cramps specifically in hands and feet? The low calcium can also cause tingling in the face and lips.

  • Leg cramps in bed at night and also during acupuncture she felt leg cramps...when she should have been relaxing

  • I have the list from Louise Warvill thank you. It's the same as it was a approx 1 year ago. I was kind of hoping there'd be updates on more success stories with more good endos added to the list in the past year.

  • Most Endos proscribe to the BTA and RCoP guidelines, therefore they will go strictly by the TSH alone. Unfortunately, in the UK it has to rise to 10 before being diagnosed, (some doctors might diagnose if it slightly above range with symptoms but few and far between). In other countries we might be medicated if our TSH is around 3.

    hypothyroidmom.com/top-5-re...

  • I am willing to go ahead and trial NDT but concerned if we miss something like the correct adrenal support she still wont loose weight and sort her dry breaking hair and toileting out along with her monthly cycle improving.

    I told her Dr my Nan was overactive, my aunties underactive, Diabetes on my dads side of the family, he's had his leg amputated after suffering clogged arteries and blood clots for years.

    I suspect my mum has thyroid issues that have also been undiagnosed as she is like a walking chemist.

    Laxatives, water retention tablets, arthritis pain killers and ant inflammatory pills, sleeping pills for the past 42 years, high blood pressure pills, she's now diabetic and on pills for that. she used to suffer panic attacks and anxiety, she's well over weight and has brain fog! it's endless!

    Luckily I try to look at food as medicine and not patch up each symptom with a different script.

  • I'm now starting to wonder if best to start NDT, and then tell Dr what and why and wait to see endo on NHS in June and again just tell the endo what we're doing.

    maybe patiently waiting for someone to pin point the exact root and get the exact plan for her is a bit pie in the sky....mmmm decisions decisions...x

  • I am sorry this young lady is having such a difficult time. I'd like to make an observation on her saliva results. She appears to have a normal morning sample & then the rest are above range particularly her night time which would be better closest to bottom of range. Nutri Adrenal is normally for low cortisol & could be making her feel worse. She may sleep better taking herbs which lower cortisol, such as Holy Basil & she needs lots of wholefood vit c to support her adrenals. She is very clearly hypothyroid, as others have said she needs full thyroid panel, Vit b12, vit D & iron tested.

    My recovery has occurred as a consequence of sacking two Endo's & taking control of my own health, this time last year I was bed bound & although not 100% I can hold down a senior role & take care of myself & family. This site and others are invaluable ways of learning & sadly, private bloods give you position on t3 & antibodies, fighting with GPs & labs is exhausting.

    Good luck

  • The results were last June and at the time she was weight training and still eating gluten and dairy and probably sugar.

    i'd be interested to re test 24 saliva now to get up to date readings. Maybe ill do that before deciding next step...x

    she has no problem getting to sleep or getting up in the mornings thankfully

  • Thanks.

    Do you know if the Armour will reduce the number of nodules over time or shrink them?

    I think we should keep Endo appointment to keep and eye on them (hope they'll still see her when we tell them she's self medicating) :/

  • I think hoping for detailed digging as you're hoping may be pie in the sky. I've had thyroid cancer and been mostly housebound for the 3 years since treatment, and no doctor has shown any concern about getting me up and running again. My Endo takes a very simplistic approach with TSH, and if that looks right there are no further questions.

    Lots of the stuff you've discovered about your daughter's gut health, etc, will be outside the scope of the NHS, as is salivary cortisol. Those are all things that are self medication only. I think you're on the right track with all those investigations, you're unlikely to get any further than that through the NHS.

    I agree with others that self medication may be your only route. If I were you I'd be tempted to wait until the Endo appointment and see if you get any joy.

    The other difficult issue that comes from your post - is your daughter planning an athletic career as a dancer, or does she have something behind the scenes in mind? If the former I think she needs to have a really hard think about it, because if she is hypothyroid that is a lifetime chronic condition. Even the most optimal medication will not get you to a point of fitness that other people have.

    Months ago someone posted who was an endurance runner. She talked about how she managed her hypothyroidism. Even with the best medication her best times were lower, And most significantly she needed longer recovery times than other athletes as her T3 levels became depleted. She said she'd had to accept that her goal was no longer to be the best and compete with the best.

  • Thank you for you reply.

    I have just read your story. Sorry to hear of your troubles.

    I have spent the last year+ reading as much as I can to help my daughter. She's lucky we've paid for so much privately. The meal plan from a personal trainer really helped her regain her health. 4 meals per day with various supplements put her on the right road.

    As her body doesn't look as she deserves it to look for her efforts she may decide to be a dance teacher, she's not sure yet. Still one year + to go and she's hoping that Armour will give her back her figure....

    It's a big step...x

  • I think if you want to see serious improvement within a year, self medication with armpit is probably the way to go. Waiting for NHS treatment will probably take longer, because you can really only adjust doses every 6 weeks at the shortest - my Endo was actually seeing me every 3 months to make changes, and sometimes people are unlucky enough not to be offered any dose adjustments but just left to sink or swim with a starter dose.

    But it's not uncommon to actually feel worse on a starter dose, or to have GPs (or endos) who don't understand the blood results reactively raise and lower people's doses whilly nilly. Or of course insist your blood results are now normal, when you still feel crap. Or fight for a to get T3 added to the mix, Etc.

    I've now been on NDT for 3 months, and I'm expecting to be at nearly my perfect dose in 3 more months. Then it might need a little more tweaking. That's if all goes according to plan. I am going quite slowly, but that's because I don't want any hiccups, and value all the blood tests I will have collected to keep for reference.

  • She's decided she will start 1/2 grain by night and 1/2 mornings and up dose every 2 weeks. She's going to take sublingually as last time she had to collect stool samples she found whole vits/supps in there.

    We'll arrange for another 24 hour saliva cortisol test too so we know how to treat adrenals.

    Fingers crossed.

    For now we wont tell Dr and I'll send her along to request some more blood works in 6 weeks then confess after that.

    She can see endo in June re the nodules on thyroid. Hopefully by then we may see some significant sigs of improvement to report.

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