Thyroid

[Campy1967]

Hi ive been diagnosed with an underactive thyroid after 2 years of blood tests one was 6.3 then another a few months later it was up and down the last one in December was over 5 TSH and my doctor put me on Levothyroxine 25mg on Dec 22nd another blood test in February its very confusing as to the level the Drs will treat every website or forums say different?

[PurpleNails Administrator]

welcome to forum.

Profile says you been started on 25mcg which is lower than standard starter dose. Are you over 60 or do have heart problems?

Was only TSH measured (thyroid stimulating hormone)?

You need thyroid hormones tested FT4 & FT3 and thyroid antibodies.

[Campy1967 in reply to PurpleNails]

Ok thanks Dr said he would start me on a low dose see how i go blood test later on iam 55 not aware of any heart problems but iam on allopurinol for my kidney.

[PurpleNails Administrator in reply to Campy1967]

GP cautious starting low.

It’s takes a while for a dose to settle levels so it’s likely you need to increase dose in steps of 25mcg daily until TSH is under 2.  This is where symptoms often improve.    Testing is usually 8 weeks after changing dose so December - February is about right.

Doctors often think as long as TSH is in range that it acceptable but what really need to be tested are Free thyroxine & Free triiodothyronine (FT4 & FT3) - & these need to be good in range, it’s the frees which affect symptoms not the TSH.  

What brand do you take?  

Book thyroid repeat blood test early in morning, fast overnight & drinks lots of water. Delay dose until after draw.   Avoid supplements containing biotin 3 days before draw.  Longer if very high doses taken.  Biotin can interfere with test.  If GP can’t test more than TSH there are private options.

Thyroid UK has list of companies offering different options, some packages include thyroid function, key nutrients and thyroid Antibodies (Medichecks advanced thyroid)   Others a basic function only.  (Monitor my health) Some also have discount codes available.

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

You order test online - the kits arrives via post - sample can be taken by finger prick (extra fee for private venous draw). Post back and results available online usually quite quickly.  

Do not accept verbal results & write them down - too much scope for error.  Ask receptionist for a printout of results these will come with lab ranges.  Many have set up online access which is ideal as includes notes & letters.  (if in England, practices mandated to provide, other areas vary). I now keep my own copy of records.  eg screen shots from online results.

[Campy1967 in reply to PurpleNails]

Ok thanks for that i take levothyroxine wockhardt brand also when iam at the Drs i will inquire more i feel things like the thyroid are a little out of their field and just accept the broad normal ranges .

[helvella Administrator Thyroid UK in reply to Campy1967]

You might find this worth a read:

The normal range: it is not normal and it is not a range

helvella.blogspot.com/p/the...

[Buddy195 Administrator]

Welcome to the forum Campy1967,

So we can offer better advice, can you tell us more about your thyroid blood results (with ranges in brackets), ie we’re FT3 and FT4 levels tested in addition to TSH? Have you had any antibody tests (to identify if your thyroid condition is autoimmune) Any key vitamin tests (ferritin, folate, vitamins D and B12)? What are your current symptoms?

If your GP is unable to complete all the above tests (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:

 thyroiduk.org/help-and-supp...

[Campy1967 in reply to Buddy195]

Thanks they just told me the TSH levels maybe i should have inquired more and wrote them down iam next at the Drs end of January so will ask more i had a few blood tests over the years last one my vitamin D was slightly reduced so he told me to take A vitamin d supplement which i take regularly also ive had a bone profile blood test they all came back in range just my TSH level which has always been up and down so he started me on a low dose of levothyroxine to start with its difficult to understand sometimes?

[SlowDragon Administrator in reply to Campy1967]

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

[Buddy195 Administrator]

Do ask for a print out of your results and the ranges (as these vary between laboratories).

[Campy1967 in reply to Buddy195]

Will do next time thanks

[SlowDragon Administrator]

Standard starter dose of levothyroxine is 50mcg

Levothyroxine doesn’t top up failing thyroid, it replaces it (a concept many GP’s fail to grasp)

So it’s important to be on high enough dose levothyroxine

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

Starting on too low a dose levothyroxine can make symptoms worse

You mentioned kidney issues

Being hypothyroid is a CAUSE of poor kidney function and is fully reversible once on adequate dose of levothyroxine

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

The GFR is reversibly reduced (by about 40%) in more than 55% of adults with hypothyroidism[40] due to several reasons.

Hypothyroidism results in a reversible elevation in serum creatinine due to the reduction in GFR as well as possible myopathy and rhabdomyolysis. There is a reduction in serum cystatin C levels in hypothyroidism due to reduced production, consequent to reduced cellular metabolism.[30] Both these changes are reversible with treatment of hypothyroidism. 

Again…..not something GP might be aware of

Levothyroxine should have been started after 2 blood tests with TSH over 5 ……with symptoms

Starting levothyroxine - flow chart 

gps.northcentrallondonccg.n...

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

Book your appointment ideally, just before 9am and last dose levothyroxine 24 hours before test

You will need increase in dose levothyroxine up to 50mcg

Repeat bloods 6-8 weeks later

This goes on over coming 6-12 months until dose is high enough to offer full replacement

Typically that’s approx 1.6mcg levothyroxine per kilo of your weight per day

Meanwhile ESSENTIAL To test vitamin D, folate, ferritin and B12

These are frequently low when hypothyroid due to low stomach acid leading to poor nutrient absorption and low vitamin levels as direct result

Have you had thyroid antibodies tested yet

About 90% of primary hypothyroidism is autoimmune thyroid disease, also called Hashimoto’s, usually diagnosed by high thyroid antibodies

The fact your TSH has been “going up and down “ suggests autoimmune thyroid disease

[DelicateInput in reply to SlowDragon]

Hi - Every time I come on this forum, I see there is another symptom of an underactive thyroid that I have been suffering from for years on end which has been totally ignored. My GFR was 90+ until about age 63 when it suddenly dropped to about 60. It is well below that now. At that point I had had raised (6.5+) TSH for ten years and low T4. The T4 itself dramatically dropped from 25 to 9 ten years earlier over the space of a year. I was just told 6.5 did not warrant treatment and 9 was within range and adequate.

I just wonder what I am going to find out next that I did not know were symptoms - so far, elevated BP, cholesterol, falling hair.

[ICE187 in reply to DelicateInput]

Welcome to the club. Hypothyroidism has dozens upon dozens of symptoms. Tinnitus, Gut issues, weight loss/gain, vision issues" Both hyperthyroidism and hypothyroidism, if left untreated, could lead to the cornea ulcerating, causing cataracts and perhaps even vision loss., nail changes, muscle and bone pains, cold intolerances to name a few. My kidney function dropped like yours did before I was treated with Levothyroxine. I was misdiagnosed for 7 years. My kidney function is much much better now.

[Campy1967 in reply to ICE187]

Thanks yep had most of them conditions all seem to start when i was diagnosed with gout and its all seemed to stem from there .

[ICE187 in reply to Campy1967]

The association between thyroid disorders and incident gout: population-based ...by SG Bruderer · 2017 · Cited by 4 — One study reported a material association between hypo- and hyperthyroidism and the risk of gout.

[ICE187 in reply to Campy1967]

This health forum has shocked me with how stupid doctors are. I'm seeing the bigger picture now "let's treat each symptom to make more money instead of treating the actual cause that will stop the symptoms".

[Campy1967 in reply to ICE187]

Just thnk GP are not clued up on these matters as much as they should be .

[ICE187 in reply to Campy1967]

In 2015, I gained a lot of weight. My diet had not changed. I had developed acid reflux and had monthly kidney stones. I was diagnosed with non alcohol fatty liver at that time. I weighed 170 pounds prior, then jumped to 225 pounds in 2015. My bloods were very high on cholesterol, very low vitamin d. My tsh was already at 8. The cut off was 4 something. I was diagnosed with sinus tachycardia at the same time. Nothing was mentioned about my tsh number or vitamin levels. Prescribed statins and bp meds only. The statins did nothing to lower my cholesterol, so I stopped taking them. The bp meds did help, but my health kept declining. Late 2021 is when I was hit with all kinds of issues that I listed above. I also had night sweats, then rapid weight loss. My muscles were being eaten away. I was looking like I had terminal cancer and felt like it too. I found a new doctor who was old school and he listened to me. He knew immediately what was going on. He ordered the right tests and now I am recovering. I started Levothyroxine last year in April and my symptoms have seriously improved. I can't have any gluten now as gluten triggers many of my past symptoms to flare up.

[DelicateInput in reply to ICE187]

Whist it is a relief to me to see that your kidney function improved after taking levothyroxine and mine hopefully will, I can see from your post that I have yet another symptom which is a cataract. It was identified in 2014 but the opticians say it is very very slow growing. I attributed it at the time to my use of eye drops for hay fever, which are known to cause cataracts. The opticians say it is unlikely I will ever need a cataract operation but in 2014 one did write to my GP who obviously did not link the two. I had quite an argument in 2014 with my GP about my thyroid readings with him saying TSH readings of 6.5/7.5 were perfectly normal. The reason for my visit was that I had been breathless on the treadmill at the gym for about nine months and felt unwell. I had and still have a longstanding cough/chest problem. The next day, I got a herpes virus on my lip and the following month I suddenly developed RA. I am sure they are all linked.

I had a very good GP after that who organised a scan of my thyroid.

I just wonder what else. This is an immensely useful sight.

[ICE187 in reply to DelicateInput]

RA and Hypothyroidism go hand in hand. ncbi.nlm.nih.gov

ncbi.nlm.nih.gov › pmc

by SCV Hsia · 2017 · Cited by 4 — It has been reported that thyroid hormones contributed, at least in part, to herpes simplex virus type 1 (HSV-1), an α-herpes virus

[ICE187 in reply to DelicateInput]

This site is amazing. The people here are awesome, but finding a doctor that will listen is a different story. Being under treated with Levothyroxine will often make your symptoms worse. Once you are on the correct dose and your thyroid numbers are in OPTIMAL range, I believe you will feel a major improvement.

[ICE187 in reply to DelicateInput]

Knowing what I now know, if a doctor ever tells me that "6.5/7.5 were perfectly normal", I will go to jail for hitting him while saying and that black eye is perfectly normal too.

[Auders in reply to DelicateInput]

Blimey! I didn’t know it could cause cataracts! I’m off for a pre-op on Monday for one in my right eye. Never would have linked it!

[ICE187 in reply to Auders]

Look into N-Acetyl L-Carnosine eye drops for cataracts. It is known to reverse cataracts.

L‐carnosine has been shown to have an antioxidant effect on the cataractous lens (Babizhayev 1989). Consequently, it is possible that topical administration of NAC could lead to a reduction in cataract by either slowing down the progression of the cataract or indeed reversing the cataractous change.Feb 28, 2017

ncbi.nlm.nih.gov › pmc

N‐acetylcarnosine (NAC) drops for age‐related cataract - PMC - NCBI

Tip, it is by far much cheaper to make your own by getting the powder form and eyewash or colloidal silver. I use the powder and eyewash. I'm scared of messing up with the colloidal silver.

There is a youtube video showing how to make it. NAC eye drops on youtube.

[Auders in reply to ICE187]

oh wow! I did not know that, I will definitely have a read. I think my right eye will have gone too far by now but left eye only just developing. Thank you very much 🙏

[ICE187 in reply to Auders]

I suddenly developed cataracts as well just after diagnosed with hypothyroidism. I make my own drops, but I don't use them daily. My vision was getting bad and fast. Within 1 year, I went from no glasses to the 1.0 reading glasses to 3.5 reading glasses. I have since dropped back to 2.0. I'm hoping to go back to no glasses.

[ICE187 in reply to Auders]

The NAC drops are unique. You can find a lot of info online. The stuff actually penetrates behind and inside the eye. A guy on Amazon claims he was due cataract surgery, but started these eye drops and totally got rid of his cataracts and didn't need surgery.

[hoooray]

Hi. Firstly sorry that you have been diagnosed with an under active thyroid, however I'm glad that you are now finally getting the medication that you need. Why on earth did it take doctors 2 years to sort you out? It's normal for forums and websites to give conflicting information, I'd suggest sticking to sensible ones like this. Did your doctor talk to you about when to take your levothyroxine? Coffee (caffeine) can interfere with tuptake, so for me that meant not taking in the morning. I take mine in the evening. Hope that you now feel better and your levels remain stable. (PS: If you are in the UK did you know that you can get a medical exemption certificate if you're on levothyroxine, it means that you get free prescriptions for life - all prescriptions not just the levothyroxine)

[Campy1967]

Thanks for that ive no idea why he didn't start treatment earlier he kept saying we will review it in a couple of months blood test etc went on like that for a out 5 blood tests i did question it but got told it might stabilise etc also i take mine levothyroxine in a morning about 7.30 and avoid all food and caffeine for about 2hrs afterwards and no Doctor didn't really explain when to take them or how found out mostly my self like i say iam back at the Drs February so question wil be asked .

[PurpleNails Administrator in reply to Campy1967]

Some doctor are reluctant to diagnose & start people on replacement, not helpful if you need treatment, longer replacement delayed the longer it may take to recover.  

You also need to make sure any other medications or supplements are taken well away from levo.

[Dancer57]

Hi, I only joined this forum last week with a question about heart palpitations with Hypothyroidism.

I have to say I found the information provided by the forum members to be very useful more than my GP surgery who are still adamant my symptoms have nothing to do with an under active thyroid. I have been left on 37.5mcg of Levothyroxine for 6 years with TSH increasing near to top of range.

Anyway, as suggested on this site I have finally managed to get a dr to let me have a blood test for vitamins, T4,T3 etc so I can get a better idea of what my Thyroid is actually doing rather than relying only on the message the brain sends to the Thyroid.

Not all GPs may be the same but mine are stuck in a reference range box and won't come out of it to at least look at the bigger picture with what might be going on.

Good luck!!