So many questions : Hello am new here Just... - Thyroid UK

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So many questions

Debann01
Debann01

Hello am new here

Just diagnosed with low throid am currently taking levothroxine for about 7 weeks now 25 mg

Some days are OK but like today I keep getting a really uncomfortable tight feeling in my throat and find it hard to swallow

I feel really low mood to the point where I could cry all day

My hair is falling out in clumps

Also keep getting pins and needles in my hands a lot

I do have low b12 as well been given 5 load injections for these

Now am not back for any more follow up till the 3rd of October

Any advice would be appreciated as I don't know what going on with my body at the moment docs not telling me much

Doc did say I was animic as well told I will be on injections and levothroxine for rest of my life is this right

Just want to know when does the levothroxine start working and when I should feel better

3 Replies
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SeasideSusie
SeasideSusieAdministrator

Debann01

You were started on a very low dose of Levo. 25mcg is the starting dose for children, the elderly and those with a heart condition. Otherwise 50mcg is the starting dose and should have follow up thyroid function tests every 6 weeks, with a 25mcg increase when results show that you need an increase. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo if that is where you feel well, so your increases should continue until you reach this stage. Your GP may say once you are in range that's enough, but it's not.

What were your test results on diagnosis? You should have had TSH and FT4 done. Did you also have thyroid antibodies tested - thyroid peroxidase (TPO) and Thyroglobulin (TG), this will tell you whether or not you have autoimmune thyroid disease aka Hashimoto's which is the most common and is where the antibodies attack the thyroid and gradually destroy it.

So you now need to arrange a new thyroid function test. When booking thyroid tests, always book the very first appointment of the morning and fast overnight (water allowed) . This gives the highest possible TSH which is needed when looking for a diagnosis, an increase in dose or to avoid a reduction. TSH is highest early morning and lowers throughout the day. It also lowers after eating. Also, take your Levo after the blood draw because if you take it before then your FT4 will reflect this and show higher than what is normally circulating. We usually advise 24 hours between last dose of Levo and blood draw so if you take your Levo in the morning then delay until after the test, or if you take it at night then delay that dose until after the test. These are patient to patient tips which we don't discuss with doctors or phlebotomists.

You would also benefit from testing Vit D, Folate and Ferritin. If these have been done, please post results with their ranges so that members can comment. As you are receiving B12 injections, it's quite likely that your other nutrient levels are low or deficient as well so they need checking. Folate should have been done when B12 was done.

Hello

I don't have my test results I passed out in the kitchen about 2months ago and been feeling really horrible and tired all the time before this

I went to see my gp and she did some blood tests

She phoned me back the next morning and said she as given me a prescription for levothroxine as my throid was low also my vit d was low which she also give me tablets and my b12 was low

I have spoke to the doctor since and she said I will feel better once the tablets and the injections have start working

Am not due back now till October when they will test my throid again incase my meds need changing and I will have my next b12 injection

The nurse did tell me that I will need both for life now is this right

The doc as not told me much I was told about my condition very little and over the phone in a telephone consultant

SeasideSusie
SeasideSusieAdministrator in reply to Debann01

Debann01

Always ask at reception for a print out of your test results. Don't bother asking the doctor, ask at the reception desk, and make sure you get a print out not verbal or handwritten results. You will find this information very useful from now on, you can compare how you feel on a certain dose when your results are at a certain level, and this can help with dose adjustment where your thyroid is concerned and you can keep an eye on your other test results too.

So when you have your results for all your tests, come back and post them, with their reference ranges, and I can tell you if you have been given the correct amount of D3 and I will tell you about the important cofactors needed when taking D3 that you will need to buy yourself.

Folate and B12 work together so this must be tested to see if you are deficient, if so you will either need folic acid prescribing or the level may not be bad enough for that and you may need to buy your own supplements if it's low.

If you've been taking Levo for 7 weeks then you would have started around the end of May. Protocol is for a retest 6-8 weeks after starting Levo, with an increase of 25mcg, then another retest 6 weeks later and another increase of 25mcg, continue testing and increasing in this way until your levels are where they need to be for you to feel well. To leave it 4-5 months before retesting after starting you on such a tiny dose of Levo is madness, it goes against protocol. I would just book your retest now and if questioned you can refer to the NICE Clinical Knowledge Summary - which your GP should know about - which states

cks.nice.org.uk/hypothyroid...

Initiation and titration

•The dose of levothyroxine (LT4) should be individualized on the basis of clinical and biochemical (thyroid function tests) response. Treatment must be monitored regularly to determine an adequate dose and to avoid both under-treatment and over-treatment.

• The initial recommended dose is:

◦For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.

◾This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.

◦For people aged over 50 years and people with cardiac disease or severe hypothyroidism: 25 micrograms once daily, adjusted in increments of 25 micrograms every 4 weeks according to response.

•Once a stable thyroid-stimulating hormone (TSH) level is achieved and an adequate dose determined, arrange follow up to check thyroid function tests (TFTs) at 4–6 months and then annually.

Even though that says 3-4 weeks, as it takes 6 weeks for Levo to be fully absorbed then that's a better time scale.

Your GP is keeping you ill and prologing your agony. You need to get onto a sensible dose of Levo much quicker than the pace this GP has set. Either stand your ground and insist on proper timing of retesting and increasing dose or see another GP.

The tight feeling in your throat and it being hard to swallow could possibly be because you may have autoimmune thyroid disease - Hashimoto's as mentioned above. Mention this discomfort, ask for antibodies to be tested - both types - and mention that an ultrasound of your thyroid would be a good idea.

B12 injections are generally for life.

Levothyroxine is replacement thyroid hormone. Your thyroid, for whatever reason, isn't making enough hormone for you to be well, so it has to be replaced. Again, it is for life so it's important to get into a correct routine for taking your daily Levo in the correct manner which is

1) Take Levo on an empty stomach - one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc as these will affect it's absorption. Water only for an hour each side.

2) Any other medication and supplements need to be taken at least 2 hours away from Levo, some need 4 hours.

3) You can take it when you want - on rising, before bed, middle of the night if you regularly get up to use the bathroom. Just remember about keeping it away from food and drink as mentined in (1) above. If you take it in the evening and have a large evening meal, then leave at least 3 hours before taking Levo.

Have a look round Thyroid UK's main website (this is their forum) for lots of information about hypothyroidism

thyroiduk.org/tuk/about_the...

Work your way down the purple menu on the left hand side.

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