So put in a SAR to see if I could find out anything about my past treatment.
My Gp records have Lobectomy listed in my records but surgeon told me he had to remove everything and couldn't save any tissue. This was January 1995.
Have got back some records from that time, still sifting through but have found some interesting bits
I consented to a Left lobectomy, had a US which said all of thyroid was covered with nodules, colloid goitre, much appeared cystic, left lobe had a nodule that was approx 3cm's. various blood test results , will add more details later. so left lobe removed , it says right "sub total" removal. The surgeon appears to have added a handwritten note to a typed record "given that this was an almost complete removal, should be started on 100mcg , " back to finish in a bit
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so the histology reports say no neoplasm, nodular colloid goitre hyperplasia, before removal July 94 TSH 0.50 total T4 129 op day TSH 0.58 Total 113 week later TSH 4.90 Total 101, FT4 13.9. 4 weeks post op TSH 7.80 Total 127 FT4 20.1 lots of up down results , lots where it has ? compliance T3 not tested only occasional FT4, before op Chol 3.4 few months after Chol 4.3, year later 4.7, year after chol 5.2.
After the TSH 7.80 Total 127 FT4 20.1 letter sent to GP not mentioning TSH but saying FT4 is almost at top of range so need to be careful about over replacement? with a TSH like that.
Have had random up and down TSH numbers and FT4 numbers over last couple of years and couldn't understand how or why, still don't but at least I have some info to peruse now
SlowDragon helvella Charlie-Farley any advice or thoughts on this, just had a call from GP to about some of daughters bloods, will get print out, she is 15 had major spinal surgery a year ago, having digestion problems, nausea, vomiting, diarrhoea, intermittently , missing a lot of school, low and behold going to get print outs as Gp very concerned about low B12, low folate, HbAlc of 41 which she says is too high, lipids total of 4.5 which she says is far too high. Told GP she is probably same as me and it needs sorting
As per only TSH and FT4 were done, it was a 9.30 am appointment. no vit D, she (Doc) had said coeliac test , no sign, unless it just isn't back yet. Renal/Liver, FBC, Lipids, bone profile,
serum B12 <150ng/L ref 197.00- 771.00ng/L ,
serum Folate 2.9 ug/L 3.90-26.8 ug/L
Lab wants them repeated and has said a sample should be sent to immunology for IFA
ESR 97 mm/h 2.00-19.00mm/h, they have asked for this to be repeated too
That is a B12 level that shouldn't cause concern. It should trigger immediate action.
First, yes, test for Intrinsic Factor antibodies and, maybe, Gastric Parietal Cell antibodies. Plus, if available, an Active B12 test and even methylmalonic acid (MMA) and homocysteine.
Second, immediately after the blood draw, inject B12, then start her on folate. Lab suggestion of repeat is fine if there is any reason for them to be questioned but get on with treatment asap.
Starting B12 can result in potassium levels temporarily dropping. Don't go mad, but make sure she is getting enough potassium. Could switch to a low sodium salt for a while (typically they replace some of the sodium by potassium). But make sure her sodium doesn't drop!
Could the vomiting and diarrhoea be a severe Hashimoto’s swing or possibly Graves SlowDragon ? The cholesterol thing is more of a hypo thing but the vomiting and diarrhoea more associated with hyper. 🤔 (I need a scratching head emoji).
I would have taken meds before, I was always told to by GP. All the results from first couple of years only ever TSH, total T4 and twice did FT4, no FT3 . Never did full bloods as far as I can see, never vits or minerals. I was confused by some of my results over last couple of years since finding you lovely lot, wandering TSH's FT4 up and down like a yo yo but now I at least have some prior info to look at. Proof never had a weight problem before op, never had high HbA1c or lipids, next creature that suggests I need to exercise more, and eat less may well see my less pleasant side.
I have just been reading your previous posts and trying to get my head round everything. Crikey you have had one hell of a journey.😱. Everything you have said shows me you are really on point with your condition and the biggest obstacle seems to be a ‘sneaky GP’ as you put it. 😂
I would not leave anything they have made up unchallenged. She altered your prescription without consent and misrepresented the conversation. I would be submitting a written document to this effect. You are not the first person who I have read has had the consultation totally misrepresented- the other was for a referral to an endocrinologist where a GP blatantly lied saying there were no symptoms, when the consultation had been all about the symptoms. You literally couldn’t make this up 😱. It’s malpractice.
You seem to be still getting over hypo symptoms. And your doctor knows ’it’ from pudding (being polite hoping you recognise the saying)😉.
I have had so many of the symptoms you describe and getting on to a therapeutic dose of medication has cleared up most of it. Plantar fasciitis, carpal tunnel like symptoms. Four years ago I was hobbling around looking for shoes with Velcro closers as I couldn’t do up shoe laces.
You need to work to symptoms. Your doctor is dangerous.
Being hypo frequently raises cholesterol.
As for your daughter well she definitely needs help. It is such a challenging time to be having all these problems. Did the spinal surgery involve any other treatment than surgery? Have they checked her thyroid with a scan? Tested the Graves antibodies? The vomiting and diarrhoea are hyper symptoms that I am not so familiar with but the family history would surely point to getting it checked really quickly. Poor lass.
The low B12 need addressing. A full vitamin and mineral panel. However if she is struggling to keep anything in stands to reason she is going to develop nutritional deficiencies.
I think SlowDragon and helvella Might have more knowledge in this area. That said the parallels between us for symptoms. Have a read of my bio if you get a chance wrote it as a case study for others to read and I have some self advocacy posts too. ALSO a very good post with lots of amazing replies and some great links recently might be useful to read.
I sent via email and handed in a copy of a letter complaining about her conduct, requesting the untrue comments be removed and my prescription be reinstated to original dosage, Practice manager contacted me , saying she would talk to Doc and ask her point of view and ask it be corrected, going to check when my head stops spinning if this has happened , and will script my next letter to the Local Trusts DPO depending on result. My meds are reinstated, I am not as green as am cabbage looking 😜.
there’s links I have shared on this that might help you demonstrate to your doctor they know only enough to be dangerous.
It is all the TSH myths eta but some very insightful responses from those who have children.
You know your own condition better than any doctor and you will have a far better idea for your daughter also. Read my self advocacy posts on writing reports- it is a good way to prevent doctors misrepresenting a consultation. All accessible from my profile - just click on my face👍.
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ADVISE NEEDED: Asymmetric Thyroid with one lobe wrapping to the back of esophagus - I am a newbie
Thyroid testing post partial thyroidectomy
The biggest fauxpas in medical history
Full Medical History from NHS
Report on FNB😞
