I'm reaching out to this community some time after initially joining to see if you can help me help my mother.
I initially joined as I was having miscarriages and after 5years of fighting to get help my normal tsh finally slumped enough (from 1.2 to 3.4) to get some t4, and hey presto, we conceived and carried our little boy to term, and now have a very lively 2 year old. Thank you for the help and reassurance that my thyroid symptoms were related despite completely normal bloods for years!
I am back and desperate to help my mum. She is 65, and has had the same hypo thyroid symptoms as me all her life, with normal bloods. When she turned 60 she was diagnosed with breast cancer, and had mastectomy and chemo. A doctor (former gp) advised that breast cancer and low iodine consumption where related, and stupidly we jumped on board the iodine self-administering train without enough research first! 2 years after the chemo, and 4months after iodine started she became very hyper thyroid (TSH of 0.01). She was diagnosed with Graves, and has been on carbimozole ever since (3years). Each time they have tried to take her off of it she becomes hyper very quickly again. She is on half of the recommended minimum dose.
2years ago she suddenly became very unwell (she had been battling fatigue for a long time, but considerably worse since Graves, she has also had spells of sudden elevated heart rate and palpitations, which cardiologists believe are actually not 'heart related' and are unexplained). We had gone on holiday and she was completely floored from the travel. Bed-bound with fatigue, extreme brain fog, complete loss of appetite, nausea, dramatic weight loss, heart palpitations, rapid heart rate (resting was over 100bmp, when her normal rate is 60bpm), waking in the middle of the night with extreme hot flushes/sweats/heart racing, severe anxiety and depression. She felt so unwell she actually started to think she was dying. We all thought the cancer was back.
Anyway the NHS were not interested in helping at all, and just said 'sorry, we think you're depressed', which I believe she is, but not because she feels fundamentally low, but because it is a symptom of something else. My mum is the most adventurous person I have ever known, with such youthful wonder at the world. This is all very much not her! After a very stressful fight, she was eventually admitted to hospital and had her lymph system in her stomach scanned and told it was all clear, unlikely cancer was the cause. She was given anti-depressants to elevate her serotonin to help her 'chronic fatigue' apparently brought on by the chemo/letrozole meds.
The anti-depressant helped a little, but she has never really recovered, and now we are in the midst of the 3rd severe episode in 18months (similar to the one that started on holiday). She says it's like her brain is full of cobwebs and even having a conversation is exhausting her. All of the dreadful symptoms are back again.
So my questions really are, what are your thoughts....? Is this, as I suspect, at least partly still a thyroid issue? Her TSH is normal (between 1-2), her ft4 is normal but not fantastic (13.4). B12 etc all normal.
Can I also ask people's thought on the radioactive approach? It would eliminate the need for the carbimazole.
Her NHS endo just isn't interested, and is the head of the only hospital in our region. What on earth can I do, anyone have a private endo recommendation, someone would look at the bigger picture and symptoms and not just bloods? It would have to ideally be someone who would consider a telephone conversation as we are somewhere pretty remote, and at the moment she would be too unwell to make a long journey.
Sorry for the ramblings! I can't bare to watch my mother disappear before me.
Thank you all so much for any help.
FT4 (9 - 24) TSH (0.34 - 5.4)
Date Free T4 TSH Carbimazol dose
26/06/2015 FT4: 40.1 TSH: 0.01
04/07/2015 FT4: 50 TSH:0.01 DOSE- (10mg)
23/07/2015 FT4: 30.7 TSH: 0.01 (15mg)
19-Aug FT4: 19.3 TSH: 0.01 (20mg)
16/09/2015 FT4: 19.1 TSH: 0.01 (25mg)
14/10/2015 FT4: 14 TSH: 0.01 (25mg)
11/11/2015 FT4: 10.3 TSH: 4.33 (20mg)
09/12/2015 FT4: 14 TSH: 0.97 (20/25mg)
30/12/2015 FT4: 10 TSH: 5.45 (15mg)
23/03/2016 FT4: 18 TSH:1.21 (10mg)
20/04/2016 FT4: 16.1 TSH: 0.42 (5mg)
11/05/2016 FT4: 11.9 TSH: 0.47 (5mg)
07/06/2016 FT4: 15.8 TSH: 2.06 (5mg)
29/06/2016 FT4: 14.2 TSH: 0.93 (5mg)
17/08/2016 FT4: 14.7 TSH: 1.31 (5mg)
12-Oct FT4: 17.8 TSH: 1.96 (5mg)
21/11/2016 FT4: 17.9 TSH: 0.69 (15mg)
21/12/2016 FT4: 13 TSH: 6.68 (5mg)
01/02/2017 FT4:15 TSH: 2.32 (5mg)
24/05/2017 TSH: 1.02 (0mg)
31/05/2017 FT4: 17.3 TSH: 0.39 (0mg)
16/06/2017 FT4: 14.9 TSH: 0.32 (0mg)
28/07/2017 FT4: 14.8 TSH: 0.31 (0mg)
23-Aug FT4: 17.4 TSH: 1.28 (2.5mg)
15/09/2017 TSH: 1.25 (2.5mg) Very unwell
03/10/2017 (5mg) Very unwell
07/11/2017 FT4: 15.9 TSH: 2.08 (2.5mg) Very unwell
06/01/2018 FT4: 12.2 TSH: 1.61 (2.5mg)
21/12/2018 FT4: 13.4 TSH: 1.74 (2.5mg) Very unwell
Sorry I had the results all spaced out so they were easier to read, but it's all jumped back when I posted.
Mum was obviously very poorly when she was first diagnosed, and there was a spell mid 2018, but there doesn't appear to be any results in her computer for then, though I know she did have some done around then. She has been unwell through-out, but the severity of the symptoms, and becoming house-bound is what sets these episodes apart.
*Update blood draw 14th Feb 2019
Her basal body temperature is low (between 35.5-36.6), which through personal experience I realise indicates hypo rather than hyper.
We are still awaiting the repeat of her TRab test, and also the cortisol saliva test.
I am at a bit of a loss, none of these look particularly bad? They were drawn on Feb 14th at 10am, on an empty stomach. Her current medication is 2.5mg of Carbimazole. She also takes letrozole daily. Her bloods actually appear better (her FT4 has risen quite a lot compared to where it was 10 days prior to this episode kicking in-blood draw from Dec 21st below)
Feb 14th- Medichecks
TSH 1.95 mIU/L (0.27-4.2)
FT4 19 pmol/L (12-22)
FT3 5.18 pmol/L (3.1-6.8)
Serum Folate 10.21 ug/L (>3.89)
Active B12 57.9 pmol/L (37.5-188)
25 OH Vit D 117 nmol/L (50-175)
Ferritin 88.1 ug/L (13-150)
Iron-Serum 24.93 umol/L (5.8-34.5)
T.I.B.C. 47.13 umol/L (45-75)
U.I.B.C. 22.2 umol/L (24.2-70.1) LOW
Transferrin Saturation 52.9% (20-50%) HIGH
CRP High Sensitivity 0.41 mg/L (<5)
Dec 21st - NHS
TSH 1.74 mIU/L (0.55-4.78)
Free T4 13.4 pmol/L (11.5-22.7)
Ferritin 51ng/mL (30-480)
Sodium 141 mmol/L (133-146)
Potassium 4.4 mmol/L (3.5-5.3)
Chloride 107 mmol/L (95-108)
Urea 4.7 mmo/L (2.5-7.8)
Creatinine 58 umol/L (44-71)
eGRF >90 mL/min/1.73m^2
Bilirubin 9umol/L (<21)
Alk. Phos. 41 U/L (30-130)
ALT 24 U/L (10-49)
Albumin 45 g/L (35-50)
FBC all in range except:
RBC: 5.02 10^12/L (3.80-4.80) High
HCT: 0.464 (0.360-0.460) High
MCHC: 313 g/L (315-345) Low